A qualitative process evaluation of a community conversation intervention to reduce stigma related to lower limb lymphoedema in Northern Ethiopia.

BACKGROUND: Lower limb lymphoedema (swelling of the lower leg) due to Neglected Tropical Diseases (NTDs) such as podoconiosis, lymphatic filariasis and leprosy is common in Ethiopia, imposing huge burdens on affected individuals and communities. Stigma significantly increases the disease burden and acts as a major barrier to accessing lymphoedema care services. A multi-component stigma reduction intervention was implemented in Northern Ethiopia. Community Conversation (CC) was one of the components implemented, and aimed to reduce stigma and enhance access to and uptake of integrated lymphoedema care services with the active engagement of community members. METHODS: A cross-sectional qualitative process evaluation was conducted to document lessons focusing on CC's relevance, outcomes and implementation challenges. Data were collected from a total of 55 purposively selected participants (26 from the CC intervention site and 29 from the control site) through key informant interviews, in-depth individual interviews and focus group discussions. RESULTS: Community Conversations increased acceptability of health messages about lymphoedema and created peer learning opportunities for unaffected community members. Improvement in the awareness of CC participants about the causes, prevention and treatment of lymphoedema contributed significantly to the reduction of stigmatizing attitudes and discriminatory behaviors, thereby improving access to and utilization of lymphoedema care services provided through primary health care facilities. However, a range of challenges affecting implementation of CC and outcome quality were identified, including perceived complexity of the facilitation guide among facilitators, expectation of incentives among CC participants, inadequate implementation of facilitation principles and procedures, inadequacy of supportive supervision, and low engagement of untrained health workers in CC. CONCLUSIONS: With these challenges addressed, the implementation of CC integrated with other lymphoedema care services shows potential to reduce stigma and promote access to lymphoedema care services.

Effect of a Community-Based Holistic Care Package on Physical and Psychosocial Outcomes in People with Lower Limb Disorder Caused by Lymphatic Filariasis, Podoconiosis, and Leprosy in Ethiopia: Results from the EnDPoINT Pilot Cohort Study.

Lymphatic filariasis (LF), podoconiosis, and leprosy are highly stigmatized neglected tropical diseases that can cause lower limb swelling and deformity. Simple interventions to support self-care can reduce their physical impacts, but little is known about how to address the psychosocial needs of people living with the diseases, and about how to scale-up morbidity reduction programs. EnDPoINT is a multistage implementation study designed to address these knowledge gaps by developing and evaluating a holistic care package that can be integrated into the Ethiopian health system. This article presents the quantitative results from the EnDPoINT pilot, in which the effectiveness of the care package was assessed in 251 participants from one district in northern Ethiopian using a pre-post design. Reductions 12 months after care package initiation were seen in attacks of acute adenolymphangitis (adjusted odds ratio for attack in last month 0.005; 95% CI 0.001, 0.02; P < 0.001), lower limb and foot circumference (mean difference lower limb circumference -2.0 cm; 95% CI -2.3, -1.8; P < 0.001; foot circumference -2.3 cm; 95% CI -2.5, -2.0; P < 0.001), and lymphedema stage (mean reduction in stage -0.27; 95% CI -0.37, -0.19; P < 0.001). Significant improvements were also observed in scores assessing disability, quality-of-life, depression, stigma, discrimination, and social support. This study thus suggests that the EnDPoINT care package is highly effective in reducing morbidity in people living with LF, podoconiosis, and leprosy in northern Ethiopia.

Stakeholder perspectives on an integrated package of care for lower limb disorders caused by podoconiosis, lymphatic filariasis or leprosy: A qualitative study.

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.

Knowledge, attitudes and practices of health professionals towards people living with lymphoedema caused by lymphatic filariasis, podoconiosis and leprosy in northern Ethiopia.

BACKGROUND: Podoconiosis, lymphatic filariasis and leprosy are highly stigmatised neglected tropical diseases that cause lymphoedema. Their enormous impacts on health-related quality of life, mental health and economic productivity can be significantly reduced by morbidity management and disability prevention (MMDP) services, but to deliver such services requires appropriate training of healthcare professionals. The aim of this study was to assess the knowledge, attitudes and practices (KAP) of rural Ethiopian healthcare professionals towards people with lymphoedema as a way to assess training needs. METHODS: This study used questionnaires to quantitatively assess KAP towards people with lymphoedema among rural healthcare professionals in northwest Ethiopia before and 12 months after a short training intervention. RESULTS: Questionnaires were administered to 14 health professionals at baseline and 21 at follow-up. At baseline, 71% (10/14) were found to hold at least one stigmatising attitude towards lymphoedema patients, compared with 66% (14/21) at follow-up. Large gaps in knowledge were noted, with many unable to identify ways of treating/preventing the diseases. CONCLUSIONS: This study showed high proportions of healthcare workers holding stigmatising views and lacking essential knowledge about lymphoedema. To maximise the impact of MMDP interventions, further research is urgently needed to understand how to address these issues.

A qualitative study on the implementation of a holistic care package for control and management of lymphoedema: experience from a pilot intervention in northern Ethiopia.

BACKGROUND: Neglected Tropical Diseases (NTDs) such as podoconiosis, lymphatic filariasis (LF) and leprosy mainly affect communities in low resource settings. These diseases are associated with physical disability due to lymphoedema as well as poor mental health and psychosocial outcomes. Integration of care across these NTDs at primary health care level, which includes mental health and psychosocial care alongside physical health care, is increasingly recommended. METHODS: A holistic integrated care package was developed and piloted as part of the EnDPoINT project in Gusha district, Awi zone, Ethiopia. The intervention was conducted at the health care organization, health facility and community levels. To assess the impact of the care package in terms of acceptability, scalability, sustainability and barriers to implementation, a qualitative study was conducted in January 2020. This included four focus group discussions (29 participants) and ten key informant interviews with decision makers, health professionals, patients, and community representatives. RESULTS: The integrated lymphoedema care package was found to be efficient compared to vertical programs in saving time and resources. It also resulted in improved awareness of the causes, treatment and prevention of lymphoedema, in marked improvements in the lymphoedema, and in reduced stigma and discrimination. The care package was found to be acceptable to patients, health professionals and decision makers. The barriers to integrated care were unrealistic patient expectations, inadequate dissemination across health workers, and poor transportation access. Health professionals, decision makers and patients believed the integrated lymphoedema care package to be scalable and sustainable. CONCLUSION: The integrated holistic care package was found to be acceptable to patients, health professionals and decision makers. We recommend its scale-up to other endemic districts.

The impact of podoconiosis, lymphatic filariasis, and leprosy on disability and mental well-being: A systematic review.

Leprosy, podoconiosis, and lymphatic filariasis (LF) are among the priority neglected tropical diseases (NTDs) in Ethiopia. The disability, psychosocial, and mental health status of people affected by these NTDs are still overlooked in global NTD discourse. The objective of this systematic review was to synthesize the existing evidence describing the disability, psychosocial, and mental health status of people affected by leprosy, podoconiosis, and LF prior to developing a holistic physical and psychosocial care package for these individuals. We searched papers reporting on disability, psychosocial, and mental health status linked to these 3 NTDs. The protocol was registered in PROSPERO with registration number CRD42019128400. Peer-reviewed articles were searched and extracted from Medline, PsycINFO, Global Health, and Embase. Articles published in English, irrespective of the year of publication, using a quantitative study methodology, were included. Abstracts and full texts were reviewed by 2 reviewers. Data were extracted and narratively summarized, as the studies were heterogeneous and used different outcome measures. Out of 1,318 titles/abstracts screened and 59 full text studies reviewed, 24 fulfilled the inclusion criteria. Fourteen studies provided evidence of the disability associated with leprosy, podoconiosis, or LF. Ten studies provided evidence on the association between the 3 NTDs and mental health or psychosocial outcomes. The prevalence of grade 2 disability varied from 3.9% to 86%. The most commonly reported mental health impacts were depression and mental distress. A high burden of mental illness was reported, varying from 12.6% to 71.7%; the suicidal ideation was also high (18.5%). In conclusion, disability and poor psychosocial and mental health status are associated with leprosy, podoconiosis, and LF. For optimum management of these NTDs, holistic care including both physical and psychosocial interventions is vital.

Development of an integrated, holistic care package for people with lymphoedema for use at the level of the Primary Health Care Unit in Ethiopia.

BACKGROUND: Neglected Tropical Diseases (NTDs) are a group of several communicable and non-communicable diseases prevalent in tropical and subtropical areas. The co-endemicity of these diseases, the similarity of their clinical signs, and the need to maximize limited financial and human resources suggest the importance of adoptingan integratedapproach to their prevention and treatment. AIMS: This study describes the development of a comprehensive package of physical, mental health and psychosocial care for people with lower-limb lymphoedema caused bypodoconiosis, lymphatic filariasis (LF)or leprosy as part of the EnDPoINT program in Ethiopia. METHOD: The care package was developed using a mixed-methods approach, consisting of a literature review, situational analysis, Theory of Change (ToC) workshops, qualitative research, and additional workshops to fine-tune the draft care package. The care package was developed between March 2018 and January 2020 in Addis Ababa and the implementation research site, Awi zone in the North-West of Ethiopia. RESULTS: The holistic care package includes components implemented at three levels of the health care system:health organization, facility, and community. Sections of the care package are directed at strengthening capacity building, program management, community engagement, awareness-raising, stigma-reduction, morbidity management, disability prevention, follow-up visits, referral linkage, community-based rehabilitation, and monitoring and evaluation. CONCLUSIONS: The study developed a holistic integrated care package for lower limb disorder and co-morbid mental health problems caused by podoconiosis, LF or leprosy. The approach has the potential to significantly reduce lower limb disorder-associated morbidity, disability, and psychosocial problems. It also standardizes a scalable approach appropriate for the Ethiopian setting and, most likely, other countries where these NTDs are present.

A cross-sectional study to evaluate depression and quality of life among patients with lymphoedema due to podoconiosis, lymphatic filariasis and leprosy.

BACKGROUND: Podoconiosis, lymphatic filariasis (LF) and leprosy are neglected tropical diseases (NTDs) that cause lymphoedema. When left untreated, they lead to substantial disability. This study determined the quality of life (QOL) and depression associated with lymphoedema in patients with podoconiosis, LF and leprosy. The study was conducted in northwestern Ethiopia. METHODS: This baseline cross-sectional study, nested within an interventional, non-comparative, longitudinal study, included patients with lymphoedema. Depression and QOL were assessed using versions of the 9-item Patient Health Questionnaire and Dermatologic Life Quality Index (DLQI), respectively, that had been translated into Amharic and validated. Factors associated with depression and QOL were assessed using multivariate linear regression analysis. RESULTS: Of the 251 patients with lymphoedema included in the study, 119 (47.4%) had moderate to severe depression and overall QOL was poor (mean±standard deviation [SD] DLQI score: 11.4±4.2). Disability was significantly associated with depression (ß=0.26 [95% confidence interval {CI} 0.19 to 0.33]). Currently receiving treatment (ß=-3.05 [95% CI -5.25 to -0.85), disability (ß=-0.08 [95% CI -0.15 to -0.01]) and social support (moderate support: ß=-2.27 [95% CI -3.66 to -0.89] and strong support: ß=-2.87 [95% CI -5.35 to -0.38]) were significantly associated with better QOL. CONCLUSION: High levels of depression and low QOL were found among patients with lymphoedema due the three NTDs in Ethiopia.

Economic assessment of a community-based care package for people with lower limb disorder caused by lymphatic filariasis, podoconiosis and leprosy in Ethiopia.

We conducted an implementation research study to integrate a holistic package of physical health, mental health and psychosocial care for podoconiosis, lymphatic filariasis and leprosy into routine healthcare in Gusha cluster, Guagusa Shikudad district, northwest Ethiopia. The healthcare package included training patients in lower limb hygiene and skin care and provision of shoes, hygiene supplies and medication. The implementation activities included training events, workshops, awareness raising, self-help groups, supportive supervision, staff secondments and advisory board meetings. The cost of implementing the care package in Gusha cluster, with a population of 30 558 people, was 802 655 Ethiopian birr (ETB) (£48 159) and the cost of delivering care to 235 participants was 204 388 ETB (£12 263), or 870 ETB (£52) per person. There was a 35% decrease in the mean disability scores (measured using the World Health Organization Disability Assessment Schedule 2.0) and a 45% improvement in the dermatology-specific quality of life (measured using the Dermatology Life Quality Index) at the 3-month follow-up compared with baseline. There were reductions in the number of days with symptoms, days off usual activities/work and days with reduced activity due to illness, all of which were statistically significant. Our pilot suggests that integration of the care package into routine healthcare in Ethiopia may be effective in improving health-related quality of life and disability and reducing time out of economic activity due to illness.

EnDPoINT: protocol for an implementation research study to integrate a holistic package of physical health, mental health and psychosocial care for podoconiosis, lymphatic filariasis and leprosy into routine health services in Ethiopia.

INTRODUCTION: Neglected tropical diseases (NTDs) causing lower limb lymphoedema such as podoconiosis, lymphatic filariasis (LF) and leprosy are common in Ethiopia. Routine health services for morbidity management and disability prevention (MMDP) of lymphoedema caused by these conditions are still lacking, even though it imposes a huge burden on affected individuals and their communities in terms of physical and mental health, and psychosocial and economic outcomes. This calls for an integrated, holistic approach to MMDP across these three diseases. METHODS AND ANALYSIS: The 'Excellence in Disability Prevention Integrated across NTDs' (EnDPoINT) implementation research study aims to assess the integration and scale-up of a holistic package of care-including physical health, mental health and psychosocial care-into routine health services for people with lymphoedema caused by podoconiosis, LF and leprosy in selected districts in Awi zone in the North-West of Ethiopia. The study is being carried out over three phases using a wide range of mixed methodologies. Phase 1 involves the development of a comprehensive holistic care package and strategies for its integration into the routine health services across the three diseases, and to examine the factors that influence integration and the roles of key health system actors. Phase 2 involves a pilot study conducted in one subdistrict in Awi zone, to establish the care package's adoption, feasibility, acceptability, fidelity, potential effectiveness, its readiness for scale-up, costs of the interventions and the suitability of the training and training materials. Phase 3 involves scale-up of the care package in three whole districts, as well as its evaluation in regard to coverage, implementation, clinical (physical health, mental health and psychosocial) and economic outcomes. ETHICS AND DISSEMINATION: Ethics approval for the study has been obtained in the UK and Ethiopia. The results will be disseminated through publications in scientific journals, conference presentations, policy briefs and workshops.