Atinbire et al. Infect Dis Poverty (2021) 10:64 https://doi.org/10.1186/s40249-021-00846-z LETTER TO THE EDITOR Open Access The development of a capacity-strengthening program to promote self-care practices among people with lymphatic filariasis-related lymphedema in the Upper West Region of Ghana Solomon Abotiba Atinbire1* , Benjamin Marfo2, Bright Alomatu2, Collins Ahorlu3, Paul Saunderson4 and Stefanie Weiland4 Abstract Background: The Upper West region of Ghana is mostly made up of rural communities and is highly endemic for lymphatic filariasis (LF), with a significant burden of disability due to lymphedema and hydrocele. The aim of this paper is to describe an enhanced, evidence-based cascading training program for integrated lymphedema manage- ment in this region, and to present some initial outcomes. Main text: A baseline evaluation in the Upper West Region was carried out in 2019. A cascaded training program was designed and implemented, followed by a roll-out of self-care activities in all 72 sub-districts of the Upper West Region. A post implementation evaluation in 2020 showed that patients practiced self-care more frequently and with more correct techniques than before the training program; they were supported in this by health staff and family members. Conclusions: Self-care for lymphedema is feasible and a program of short workshops in this cascaded training program led to significant improvements. Efforts to maintain momentum and sustain what has been achieved so far, will include regular training and supervision to improve coverage, the provision of adequate resources for limb care at home, and the maintenance of district registers of lymphedema cases, which must be updated regularly. Keywords: Lymphedema, Self-care, Training, Ghana Background suffer from lymphedema worldwide (73 countries are Lymphatic filariasis (LF) is one of the most wide- regarded as endemic), and the condition is made worse spread neglected tropical diseases (NTDs), and the by frequent attacks of acute bacterial dermatolym- suffering caused by the disease sequelae (in particular, phangioadenitis (ADLA) [1]. A 2019 paper on regis- lymphedema and hydrocele) is enormous. It has been tered cases reported to the World Health Organization previously estimated that about 14 million people (WHO), gives a figure of 1.1 million lymphedema cases due to LF worldwide, but this probably misses many *Correspondence: satinbire@aiminitiative.org unreported cases, especially mild cases [2]. While the 1 Accelerating Integrated Management (AIM) Initiative, 27 Jungle Road, true number may have declined from the figure of 14 Accra, Ghana Full list of author information is available at the end of the article © The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. The Creative Commons Public Domain Dedication waiver (http:// creati veco mmons. org/ publi cdomai n/ zero/1. 0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Atinbire et al. Infect Dis Poverty (2021) 10:64 Page 2 of 8 million in 1996 as the disease is gradually being elimi- Ghana has made significant progress in reducing the nated, the consequences of LF are generally lifelong; transmission of LF. According to national NTD program the number reported by WHO has increased slightly in data, by 2020, 99 of 114 endemic districts had achieved recent years, as registration of cases improves. interruption of transmission, confirmed through trans- The Global Programme to Eliminate Lymphatic Fila- mission assessment surveys, and have thus stopped riasis (GPELF), launched by the WHO in 2000, has MDA. However, the provision of morbidity management conducted annual campaigns of mass drug adminis- and disability prevention (MMDP) services has not been tration (MDA) in endemic areas, which have brought as successful, even though the LF control program takes about a significant decrease in disease transmission. advantage of the annual MDAs to collect information Countries involved in the programme were required on the number of suspected hydrocele and lymphedema to deliver preventive chemotherapy and to provide cases in endemic communities/districts. Mapping of LF a basic package of care for people with existing mor- morbidity using data from community drug distributors bidity (lymphedema and hydrocele) [3]. A systematic (CDD) was carried out in 2015, clearly illustrating the review and meta-analysis of hygiene-based interven- very high density of cases in the northern regions [13]. tions published in 2015 noted that scaling up of mor- Thus, about 5000 cases of lymphedema and 10 000 cases bidity management activities has been slow, partly of hydrocele have been registered in the country, accord- because of the lack of proven, evidence-based interven- ing to an NTD working paper from the Ghana Health tions [4]. A study on the economic costs and benefits of Service, many of which have gone unattended due to community-based lymphedema management in India, financial constraints; additionally, many suspected cases however, concludes that such interventions are highly are not confirmed by health professionals and remain cost-effective, with per-person savings of 185 times the hidden due to stigma, lack of awareness and the limited program’s per-person costs [5]. capacity of the health system to respond. The national Chronic lymphedema is a life-long condition and pov- NTD program estimates that there are almost 700 cases erty is common in areas endemic for LF, with poor access of lymphedema in the 11 districts (72 sub-districts) of the to health services. In these circumstances, most of the Upper West Region. burden for care falls on patients themselves and their In 2016, the NTD Programme developed a package of families, through self-care strategies. Recent reviews have care for MMDP that relied primarily on a cascaded train- proposed a self-care protocol for people affected by mod- ing approach to improve capacity within the health sys- erate to severe lymphedema [6, 7]. This protocol covers tem. After a pilot phase, the current programme for the several areas such as: Upper West Region was proposed. This paper reports on the development and implementation of a comprehen- Hygiene; washing and drying, attending to skin sive package of training in the Upper West Region, cover- lesions, medicated cream and trimming nails ing all districts and each level of health staff, down to the Exercise; standing, seated and lying exercises, day- community-based volunteers and family members. This and night-time elevation, walking, deep breathing project was carried out in the context of parallel work on Massage; mobilizing skin and tissues, lymphatic preparation of an LF elimination dossier for Ghana. massage Management of acute attacks and accessing referral Methods services Project setting The aim of the project was to develop and implement a Interventions needed to manage disease-related cascaded training program to enable better access to morbidity in resource-poor settings have been known MMDP services for lymphatic filariasis patients suffering for decades, but a greater focus on self-care has only from lymphedema and adenolymphangitis. It was imple- emerged relatively recently [8, 8]. In an innovative pro- mented in all 11 districts of the Upper West Region of gramme for both leprosy and lymphedema due to LF Ghana. The region is among twelve endemic regions for in southern Nepal, good self-care was found to lead LF, with the highest burden of lymphedema cases in the to reduced stigma, with a key feature being an increase country. Of the eleven districts in the region that were in self-respect and a feeling of empowerment in those included in the MDA distribution, eight have interrupted involved, leading to better self-care and further empow- transmission and are now focused on providing MMDP erment [10, 11]. Issues of personal attitude and motiva- services to people affected by LF. tion have been noted as important for self-care in other contexts, such as psoriasis [12]. A tinbire et al. Infect Dis Poverty (2021) 10:64 Page 3 of 8 Description of the cascaded capacity‑building intervention beginning during data collection through daily debrief- The cascaded capacity-building intervention was pre- ings and review of data and emergent themes. MaxQda ceded by a formative evaluation to identify capacity gaps 2020 (Verbi GmbH, Berlin, Germany)—a qualitative and needs among health supervisors, frontline providers, data analysis software program for storage, indexing, patient support groups, CDDs and patients themselves. and retrieval—was used to thematically analyze the IDI The training participants included purposely selected transcripts, selecting the most representative quotations respondents who were currently or previously involved in for reporting such that no minority or majority view MMDP service provision, as well as patients, community was suppressed. The survey data were analyzed using leaders or patients’ support groups in the study region. EpiInfo 3.5.4 (Centers for Disease Control and Preven- Following the needs evaluation, training materials were tion, Atlanta, USA) package to generate frequencies for developed to address the gaps in capacity to provide reporting. Comparison of frequencies was carried out MMDP services to patients by care providers, and build using the Chi square test, with significance determined patients’ ability and that of their support groups to self- by P < 0.05. manage lymphedema at home. Three cascaded training workshops were organized to train service providers on Results and discussion MMDP integration, self-care, monitoring, supervision Cascaded capacity‑building workshops and reporting of MMDP activities. The first workshop The development of a training program to improve the focused on orienting regional-level supervisors to roll- management of lymphedema in northern Ghana aimed out the capacity-building cascaded training; the second at building the capacity of health workers to provide workshop was for district-level managers and service care for patients, reducing stigma in the community, providers, and the third was a step-down workshop for and promoting MMDP integration into regular training frontline health providers, patients themselves, patients’ programs. The NTD Programme developed the training support groups, family members and CDDs. content based on the WHO capacity-building training The formation of self-care groups in every district of manual [14]. Table 1 describes the features of the train- the region with lymphedema patients, was considered ing program in Upper West Region, while Table 2 shows a critical first step for proper lymphedema manage- in more detail the participation in the various training ment at home to increase the general well-being of their workshops. members. In the first and second training workshops, providers Regional‑level orientation and supervisors were trained together, whereas parallel A four-member regional-level core MMDP techni- sessions of cascaded training were adopted for the third cal team was constituted to lead and provide techni- workshop in each district. Each workshop lasted for one cal support to the district and sub-district level teams. day. Health facility staff and other caregivers were trained This was made up of the regional NTD focal person to provide a minimum package of care to patients, which and three other disease control and surveillance offic- focused on hygiene, treatment of acute attacks, and man- ers. The regional team was given a one-day training aging lymphedema; managing hydrocele and LF treat- on lymphedema management to equip them with the ment were discussed, but are not part of the self-care required skills to train districts and also be able to man- package. A key goal was to improve access to care by age cases on their own. The training included demonstra- bringing services to the doorstep of patients. The training tion sessions with patients. took place between September and December 2019. District‑level training Subsequent field work Four training teams were formed, with membership from Following completion of the training workshops, man- the national facilitators and the trained regional core agement of lymphedema has been taking place in the team, to facilitate the trainings in the districts. From the home and in the peripheral health facilities. These activi- sub-districts, a clinician and a public health staff from ties were examined during monitoring visits. An evalu- the main health facility were invited. All sub-district level ation in mid-2020 looked at the outcomes in terms of facilities presented a case at the training for demonstra- increased care and reduced morbidity. tion in lymphedema management. Six nursing and mid- wifery training colleges in the region also participated Data collection and analysis in the training, as part of a long-term goal of getting Various data collection tools were used; these included LF MMDP included in the curricula of health training in-depth interviews (IDIs) and a questionnaire survey. institutions. Qualitative data were analyzed using an iterative process, Atinbire et al. Infect Dis Poverty (2021) 10:64 Page 4 of 8 Table 1 Features of the capacity-building interventions Upper West Region of Ghana Conducted 2019–2020 Covered all 11 districts in Upper West Region Included all levels of health staff, down to Community Health Planning (CHP) services facilities, community volunteers and family members Covered regional health management team, staff from regional hospital, district hospitals, health centers/clinics and each CHP across all 72 sub-districts Included tutors from health professional training institutions (nursing and midwifery training colleges) Relied primarily on a cascaded training approach Provided essential supplies (consumables) to health facilities and to affected persons trained in self-care to carry out self-care at home Involved the formation of self-care groups in every district that would come to health facilities for health education days Training included morbidity management and disability prevention (MMDP) content, patient presentation and demonstration, plus monitoring, super- vision, and reporting of MMDP activities tailored to management and regional/district staff Training manuals provided. Also, registers for documenting services were printed and provided for each level of the health system down to the health- facility level A system was created for reporting data recorded in registers to the national level through neglected tropical diseases coordinators and health informa- tion offices Every person affected attended training with a family support person, who was also trained in managing self-care, assisting with seeking care, and reducing stigma Sub‑district level training same region with 173 participants. Respondents in the The sub-district level training was done for staff at Com- two surveys were similar in terms of demographic and munity Health Planning (CHP) compounds and CDDs socio-economic indicators. Both surveys were carried with the aim of bringing services closer to patients. out by one of the authors. CDDs were trained on case identification and mobiliza- tion of patients to access care as well as to provide sup- Home management of lymphedema port for patients in the communities. The trainings were A majority of the LF patients interviewed during the facilitated by the sub-district teams and supported by the evaluation reportedly wash their affected limbs with soap district and regional teams. All 72 sub-districts carried and water in a specific manner, either by themselves or out the training in December 2019. with the assistance of someone at home. LF patients indi- Monthly follow-up supervision and monitoring visits cated that the MMDP intervention implemented by the were done after the training workshops. When training program has enabled them to adopt appropriate hygiene participants were assessed during the supervisory vis- behavior. For instance, the recommended practice of its, they demonstrated knowledge on LF MMDP care by washing the limbs at least once or more daily was prac- answering questions posed to them satisfactorily. ticed by LF patients with about 51% of them washing In order to improve access, health workers at commu- their affected limbs more than once per day (Table 3). nity level were included in the training. To support self- Various lymphedema morbidity management and care at home, a family member was trained to understand prevention techniques were reported by respondents the disease and the needs of the patient. New patients are as shown in Table  4, with an increase in recommended encouraged to bring a family member who can encour- practices and a decrease in the use of traditional rem- age and provide support in self-care. CDDs from com- edies. There were also changes in the strategies used to munities with cases were trained to provide support to manage acute attacks at home, as shown in Table 5. the patients and also provide the linkage between the In terms of morbidity, almost all patients with patients and the peripheral health workers. lymphedema continued to experience occasional signs of an acute attack, however, the frequency of the attacks End evaluation has reduced significantly: at baseline, 90 (54%) of the One hundred and sixty-four lymphedema patients in the patients experienced these symptoms more than twice Upper West Region were interviewed using a structured per year, while at evaluation, only 54 (34%) reported same questionnaire on patient hygiene behavior at home and (P < 0.001). lymphedema morbidity management and prevention The views and attitudes of community leaders and techniques. This was done approximately six months health staff were also sought during the evaluation. In after the training workshops were held. It was possible general, the training was credited with providing knowl- to compare many of the results with the findings of the edge about the disease, which could lead to improved baseline survey carried out one year previously in the care and reduced stigma. Another theme derived from A tinbire et al. Infect Dis Poverty (2021) 10:64 Page 5 of 8 Table 2 Cascaded capacity-building workshops attended by participants in Upper West; numbers attending (%) Training workshops organized by the NTD Topics covered Service Patients Family CDDs Programme providers and (n = 293) support (n = 598) supervisors group (n = 506) (n = 302) Workshop 1: Training of trainer for regional- Monitoring, supervision and reporting of 14 – – – level managers MMDP activities (2.8%) Assessment and staging of lymphoedema Integration of MMDP into routine activities in districts and the region Washing of affected part Exercising of affected part Limb elevation Proper wound care Prescription of appropriate footwear Workshop 2: Training of trainers of district-level Integration of MMDP into routine activities 160 60 (20.5%) 52 – service supervisors in districts and the region (31.6%) (17.2%) Monitoring, supervision and reporting of MMDP activities Assessment and staging of lymphoedema Washing of affected part Exercising of affected part Limb elevation Proper wound care Prescription of appropriate footwear Step-down training on MMDP for frontline Assessment and staging of lymphoedema 332 233 (79.5%) 250 598 service providers and users Washing of affected part (65.6%) (82.8%) (100%) Exercising of affected part Limb elevation Proper wound care Prescription of appropriate footwear CDDs community drug distributors, MMDP morbidity management and disability prevention, NTDs neglected tropical diseases, – not applicable Table 3 Frequency of washing affected limb with soap and water in the advised manner, at baseline and at the end evaluation Variables Baseline (n = 173) Evaluation (n = 164) P value n (frequency, %) n (frequency, %) More than once per day 55 (31.8) 83 (50.6) 0.001 Once daily 31 (17.9) 48 (29.3) = 0.019 More than once per week 16 (9.2) 6 (3.7) = 0.063 Once per week 11 (6.4) 11 (6.7) = 0.928 More than once per month 15 (8.7) 1 (0.6) = 0.001 Once per month 45 (26.0) 15 (9.1) < 0.001 the interviews was the problem of poverty and lack of demic. This has also adversely affected the forma- resources to facilitate health seeking among patients. tion and functioning of self-care groups. Patients have difficulty in accessing the health services, – Although all districts and sub-districts were cov- while health staff are unable to do as many home visits ered, resource constraints prevented the registra- as they would like. Supplies for limb and wound care are tion and involvement of many patients in remote often unavailable. areas, so overall coverage was less than 50%. Many challenges, including the need for resources – It came to light that not many patients with lower to support the peripheral health services, remain to be grades of lymphedema who could have benefited addressed: from the morbidity management training were being included. The additional value of invit- – Follow-up visits are often not happening due to fuel ing them includes helping them to be aware of constraints and the coronavirus disease 2019 pan- Atinbire et al. Infect Dis Poverty (2021) 10:64 Page 6 of 8 Table 4 Lymphedema morbidity prevention/management techniques among lymphatic filariasis patients, at baseline and at the end evaluation Variables Baseline (n = 173) Evaluation (n = 164) P value n (frequency, %) n (frequency, %) Hygiene/washing and drying the affected limbs 57 (32.9) 120 (73.2) < 0.001 Wound care/care for lesions 43 (24.9) 84 (51.2) < 0.001 Elevation of affected limbs 20 (11.6) 70 (42.7) < 0.001 Exercise 15 (8.7) 53 (32.3) < 0.001 Prophylactic creams 16 (9.2) 37 (22.6) = 0.001 Prophylactic systemic antibiotics 46 (26.6) 16 (9.8) < 0.001 Use of shoes/sandals 8 (4.6) 10 (6.1) = 0.718 Traditional remedies 37 (21.4) 3 (1.8) < 0.001 Other (no stress, less work, etc.) 0 (0.0) 2 (1.2) = 0.455 Don’t know any prevention means 58 (33.5) 0 (0.0) < 0.001 Multiple choices allowed. Sorted on column 3 in descending order Table 5 Treatment strategies for acute attacks, at baseline and at the end evaluation Variables Baseline (n = 173) Evaluation (n = 164) P value n (frequency, %) n (frequency, %) Cool affected limb in cold water/cold compress 41 (23.7) 115 (70.5) < 0.001 Visiting the health facility 87 (50.3) 82 (50.0) > 0.05 Having enough rest 48 (27.7) 67 (40.8) = 0.015 Elevation of the affected limb 25 (14.4) 52 (31.7) < 0.001 Drink more fluid 20 (11.6) 37 (22.6) = 0.011 Apply antibiotics on affected skin 36 (20.8) 16 (9.8) = 0.007 Avoid exercise during acute attacks 12 (6.9) 10 (6.1) > 0.05 Take antibiotics orally 73 (42.2) 2 (1.2) < 0.001 Inject antibiotics 9 (5.2) 1 (0.6) = 0.031 Traditional remedies 38 (10.9) 0 (0.0) < 0.001 Visiting traditional healers 27 (15.6) 0 (0.0) < 0.001 Don’t know any acute attack treatment 17 (9.8) 0 (0.0) < 0.001 Multiple choices allowed. Sorted on column 3 in descending order the importance of leg hygiene in controlling acute have a significant effect. The frequency of washing the attacks and slowing down disease progression. affected limb increased significantly after the training, – There are still many more staff at the peripheral while helpful practices (such as elevating the affected health facilities and at the community level, who limb, or cooling the affected limb in an acute attack) need training, as well as many patients, so an ongo- were used more frequently and potentially harmful ing program of training is needed, also bearing in practices (such as traditional remedies) less frequently. mind a certain level of staff turnover. One criticism of cascaded training is that quality may be diluted as one moves down the ladder. To mitigate Patients suffering from the consequences of LF are these negative effects, the national team and regional poorly served in most endemic areas. They frequently officers supported the district level training, and also suffer from stigmatization and discrimination, and live regional officers supported the district teams in train- in poverty [15, 15]. This study also found that local ing of community workers at the sub-district level, for beliefs about the causes of these conditions were com- maximum impact. In addition, this training program mon, often leading patients to rely on traditional heal- was very brief and focused, taking place within the ers as the first choice of care providers. space of less than four weeks, which may have helped to This study has shown, however, that even in remote maintain quality. and impoverished areas it is not impossible to change The perception of participants (including health staff, attitudes and that simple techniques of self-care can patients and family members) regarding the importance A tinbire et al. Infect Dis Poverty (2021) 10:64 Page 7 of 8 of leg hygiene changed after the MMDP training. The Authors’ contributions training of the family support groups has been hugely Study design: BM, SW, PS, SAA. Oversight of study implementation: SAA, BA. Pre- and post-evaluations: CA. Analysis and write-up: SAA, CA, PS, SW. appreciated by family members. Approval of final manuscript: SAA, BM, BA, CA, PS, SW. All authors read and The main limitations of the study are its short-term approved the final manuscript. duration and the lack of resources to improve the capac- Funding ity of peripheral health staff to visit patients more fre- This work received financial support from the Coalition for Operational quently and provide the supplies they may need. There Research on Neglected Tropical Diseases (COR-NTD), which is funded at The is an ongoing discussion as to whether nationwide insur- Task Force for Global Health primarily by the Bill & Melinda Gates Foundation, by the UK aid from the British government, and by the United States Agency ance cover for the required supplies can be approved, for International Development through its Neglected Tropical Diseases which would be a very helpful long-term solution. Program. Availability of data and materials The data behind this article can be obtained from the author on request. Recommendations Declarations – A sustainable, regular training program at peripheral levels. Ethics approval and consent for participationApproval was received from the Ghana Health Service Ethics Review Com- – The training modules should be reviewed and mittee for implementation of this study protocol, reference number GHC- updated regularly. ERC011/11/18. All involved patients and persons interviewed provided verbal – Milder grades of lymphedema should be included. consent for their participation. – Ensure availability of supplies for limb and wound Consent for publication care. Not applicable. – Registers should be available and used in all periph- Competing interests eral health facilities. The authors report no conflicts of interest. – Regular supervision of lymphedema management, whether at home or health facility. Author details1 Accelerating Integrated Management (AIM) Initiative, 27 Jungle Road, Accra, – Formation of self-care groups for health education Ghana. 2 National NTD Programme, Accra, Ghana. 3 Noguchi Memorial Institute and mutual support. for Medical Research, University of Ghana, Accra, Ghana. 4 AIM Initiative-Ameri- – Possible use of electronic registers. can Leprosy Missions, Greenville, SC, USA. – Integration with other chronic conditions requiring Received: 22 January 2021 Accepted: 19 April 2021 self-care, such as leprosy and Buruli ulcer. The NTD Programme has advocated for the scale up of this enhanced capacity-building intervention to increase References access to lymphedema management and care in remain- 1. Michael E, Bundy DA, Grenfell BT. Re-assessing the global prevalence and distribution of lymphatic filariasis. Parasitology. 1996;112:409–28. ing LF-endemic districts across the country. Based on 2. WHO. 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