Barriers to access and re-attendance for treatment of podoconiosis: a qualitative study in northern Ethiopia Girmay Tsegaya,*, Moges Wubiea, Genet Degua, Abreham Tamirub, Max Cooperc and Gail Daveyc a
ORIGINAL ARTICLE
Int Health 2015; 7: 285–292 doi:10.1093/inthealth/ihu085 Advance Access publication 23 December 2014
College of Medicine and Health Sciences, Debre Markos University, Debre Markos, Ethiopia; bInternational Orthodox Christian Charities, Debre Markos, Ethiopia; cBrighton and Sussex Medical School, Brighton, UK
Received 1 February 2014; revised 7 September 2014; accepted 11 September 2014 Background: Podoconiosis is a chronic non-infectious lymphoedema affecting individuals exposed to red clay soil in endemic areas. Evidence from International Orthodox Christian Charities (IOCC) treatment centers’ registers suggests that a significant proportion of registered patients with podoconiosis fail to re-attend for treatment, putting them at risk of worsening disability associated with the lymphoedema and attacks of acute adenolymphangitis. The aim of this study was to explore barriers to access and re-attendance of patients with podoconiosis in northern Ethiopia. Methods: A cross-sectional qualitative study was conducted at three IOCC treatment sites from February to April 2013. Twenty-eight patients and three project leaders took part in in-depth interviews. Three focus group discussions were undertaken with 22 patients, patient association leaders and project staff members. Results: Barriers to access and to continued attendance at treatment centers were recognized by all participant groups. The following reasons were reported: lay beliefs about the disease’s causation and presentation, occupational, geographic and financial barriers, stigma and conflicting expectations of treatment services. Conclusions: This study illustrates the multiple, step-wise barriers to accessing treatment faced by podoconiosis patients. These factors are dynamic, frequently interact and result from competing social and economic priorities. Keywords: Continuity of care, East and West Gojam Zone, Ethiopia, Podoconiosis
Background Podoconiosis is a chronic non-infectious disease affecting individuals exposed to red clay soil in the tropical highlands. It is found in areas of irritant soils, high altitude, high rainfall, and predominantly in low socioeconomic communities, where subsistence farmers often struggle to afford shoes, socks, or water to wash their feet.1,2 Worldwide, an estimated 4 million people have podoconiosis. In endemic areas 5–10% of the population may be affected by podoconiosis.3 Approximately 1 million people are affected by the disease in Ethiopia.4,5 Early symptoms commonly include itching of the skin of the forefoot and a burning sensation in the foot and lower leg. Early changes that may be observed are splaying of the forefoot, plantar oedema with lymph ooze, increased skin markings, hyperkeratosis with the formation of moss-like papillomata, and ‘block’ (rigid) toes. The ‘mossy’ changes predominate in a slipper pattern around the heel and border of the foot, reflecting the distribution of underlying superficial lymphatics. Later, the swelling may be soft and fluid (‘water-bag’ type) or hard and fibrotic (‘leathery’ type), often associated with multiple hard skin nodules (Figure 1),
or intermediate with both sets of features. Acute episodes (acute adenolymphangitis [ALA]) occur on average five times per year, and patients become pyrexial with a warm, painful limb, necessitating on average 4.5 days off work each episode.4,6 The economic and social consequences of this disease burden are severe.6 It is estimated that patients lose up to 45% of working days per year due to podoconiosis.7 Stigmatization of people with podoconiosis is pronounced and patients are often excluded from school, local meetings, churches and mosques.8 Podoconiosis can be completely prevented by simple measures. Primary prevention includes avoiding irritant soil exposure by wearing shoes, and foot hygiene. Secondary and tertiary prevention also includes the use of shoes, and foot hygiene.8–13 The highland districts of Amhara Region make up one region with a significant podoconiosis disease burden. In 2010, International Orthodox Christian Charities (IOCC) started a program to prevent, treat and control podoconiosis in East and West Gojam zones, Amhara Region. Evidence from IOCC treatment centers’ registers suggests that a significant proportion of registered patients with podoconiosis fail to reattend or to collect supplies for ongoing treatment. At the time the study was started, the
# The Author 2014. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. All rights reserved. For permissions, please e-mail: [email protected].
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*Corresponding author: E-mail: [email protected]
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whether podoconiosis patients in northern Ethiopia experienced similar difficulties and what other factors they considered to be major barriers to initial and continued treatment.
Methods Study area
discontinuation rate was about 8% of patients registered at any one time. According to WHO ‘adherence’ is the term used in health care to describe the extent to which a person’s behavior–taking medication, following a diet, or executing lifestyle changes–corresponds with agreed recommendations from a health care provider.14,15 Several studies indicate that poor adherence to appropriate therapy for chronic conditions results in complications and increased health care costs.16–18 In developing countries, like Ethiopia, when poor access to health care, possible lack of diagnosis, and limited availability of medications are taken into account, poor adherence undermines efforts to treat chronic conditions.19,20 Complex socioeconomic, demographic and psychological factors have been reported in various studies to affect adherence to medication therapy of chronic diseases.20 Studies have been carried out to identify factors related to discontinued collection of treatment supplies by podoconiosis patients in Ethiopia. We use an operational definition of non-attendance for collection of one or more months’ treatment supplies as representing ‘discontinued treatment’. One study conducted in the southern part of Ethiopia showed that discontinuation of clinic visits was common among podoconiosis patients. The main reasons given were: remoteness from the clinic sites, unrealistic expectation of ‘special’ aid (material or financial benefits in addition to medical treatment), concern about increasing stigma, recurrent bouts of illness and misconceptions about treatment (such as failure to experience rapid relief of symptoms).20,21 We aimed to explore
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Study design and sampling We conducted a qualitative study using in-depth interviews (IDIs), focus group discussions (FGDs) and key informant interviews (KIIs). Three of six IOCC treatment centres were purposively selected to include patients with a wide range in follow-up duration. We used purposive sampling techniques to recruit study subjects into IDI and FGD groups. Twenty-eight podoconiosis patients took part in IDIs. The IOCC project director, field officer and treatment centre head participated in KIIs as they have an on-going relationship with many patients. Having identified FGD participants with the help of treatment centre staff, we grouped them into three categories: podoconiosis patients, treatment center health agents/social workers, and patient association leaders. Each group was composed of eight participants except for treatment centre staff and social workers, who numbered six, thus giving a total of 22 participants. Data collection continued until no new themes emerged from further interviews.
Data collection Data collection was conducted over a 4 week period in March 2013 by native speakers of Amharic, the local language. Three
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Figure 1. Symmetrical swelling in a male patient from Wolaita, southern Ethiopia, who gave oral consent in 2008 for his photo to be used. This figure is available in black and white in print and in colour at International Health online.
The study was conducted in East and West Gojam zones, Amhara Region. The Region is located in the northwestern part of Ethiopia and its land area is estimated to be 170 000 km2. Amhara Region borders Tigray in the north, Afar in the east, Oromiya in the south, Benishangul-Gumiz in the southwest and the country of Sudan in the west. The region is made up of subsistence farms and grazing fields among highland plateaux and valleys.22 East Gojam zone has a total population of approximately 2 153 937 persons and an area of 14 004.47 km2. West Gojam zone has a total population of 2 106 596 persons and an areaof13 311.94 km2.23 IOCCofferstreatment in six sites (Debre Markos, Guay, Debre Elias, Emanuel, Wade and Dembecha): one in West Gojam zone and five in East Gojam zone. The study included the following ‘woredas’ (districts): Debre Markos, Guay, Debre Elias, Emanuel and Dembecha. Debre Markos is the capital city of East Gojam zone, and Finote Selam is the capital city of West Gojam zone. According to an IOCC report 6128 patients attended during the study period, of whom 1612 were from Yejube, 613 from Debre Markos, 490 from Debre Elias, 1102 from Dembecha, 1163 from Amanuel and 1148 from Wade. A map of Ethiopia showing the study area is shown in Figure 2. Most Ethiopians still rely on pack animals and carrying loads on their own heads and backs to transport goods to market. Approximately 64% of the land area in Ethiopia lies more than 5 km from an all-weather road; some 48 million people in the rural areas of Ethiopia live further than 2 km away from the nearest all weather road. On average, households are often more than 10 km away from a dry-weather road and 18 km away from public transport services.24 A photo showing a typical rural area of East Gojam is presented in Figure 3.
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types of unstructured, pilot tested interview guides were used to conduct FGDs, KIIs and IDIs. In-depth interview informants were approached at their homes through patient association leaders, while patients already attending for treatment were contacted on the days scheduled and asked to indicate whether they had experienced any problems in attending for treatment. We defined any patient not attending clinic on one or more scheduled occasion(s) as experiencing discontinuation of treatment. Those who had missed collecting treatment supplies were interviewed to establish what reasons might have contributed. Treatment centre staff arranged a private setting where interviews were held with each informant for about 20 to 30 minutes. Focus group discussion participants were asked why they thought patients might not attend the treatment centre, while key informants and treatment centre health agents were also asked how consistent patients were in collecting treatment. Discussions in all focus groups were held in neighbouring homes where the recruited participants gathered for about 1.5 hours. An experienced note-taker was hired to take notes during individual interviews and FGDs. Audio recording was also used with prior consent of the informants. A unique identifying number was given to all informants in advance to link the data obtained through interviews and FGDs.
Data analysis Field notes and audio files of interviews and FGDs were transcribed in the local language. Amharic was used during data collection and checked for accuracy through repeated playing of the audio files and scrutiny of the field notes. Unique identifying numbers and demographic variables assigned to each informant during data collection were linked to the data during transcription and names of specific people mentioned in the transcript were removed. A meaning-based translation of transcripts was made. The text data typed into the word file were organized using manual coding techniques to code and categorize related themes. To increase the validity of this, three coders were involved to organize the data based on themes from the interview guides and themes derived from the data. The coders resolved overlapping themes and inconsistencies in data sources through regular meetings, and incorporated additional themes suggested through discussion.
Ethical considerations The study participants were recruited once they were fully aware of the purpose of the study and the methods of data collection. They
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Figure 2. Map of Ethiopia showing position of East and West Gojam zones. This figure is available in black and white in print and in colour at International Health online.
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were asked to provide witnessed oral consent rather than written consent to participate in the study, since most of the participants were illiterate. Potential participants were clearly informed that they had a right to stop the interview at any time or to skip questions they did not want to answer. They were also told that interviews would be held in a private place and that identifiable data would not be viewed by any third party except the principal investigators. Permission was also gained from the IOCC since all of the study subjects were approached through the organization’s treatment centres. The scientific committee at Debre Markos University, and the Research Governance and Ethics Committee at Brighton and Sussex Medical School approved this study.
Results Characteristics of the study population A total of 53 participants were interviewed, comprising the following: patients (17 male and 19 females, patient association leaders (6 male and 2 female) and health care providers (6 male and 3 female). The mean age of the participants was 40 years (range 20 to 65 years). Most participants who were patients were rural dwellers, married and unable to read or write.
Barriers arising from beliefs about the origin and nature of podoconiosis The onset of the illness was described by patients in terms of pain followed by swelling, ‘rheumatism’, ‘chills’ and cracks in the feet. Complications of podoconiosis included wounds and recurrent acute attacks that could confine patients to bed for weeks,
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preventing them from attending for treatment. It was reported that malaria and unspecified ‘severe’ inter-current illnesses were more likely to arise as a result of having podoconiosis and to confine the sufferer to home. Most patients reported learning about the clinic services through word of mouth or from community leaders. Participants reported a range of explanatory models for podoconiosis that were physical (a leg becoming ‘dirty’ or being injured), climatic (commonly attributed to exposure to sunlight), familial or symbolic in nature. Symbolic explanations included punishment from God, the result of a curse or the consequence of walking barefoot over fresh blood or other objects that had been left intentionally in the road to target individuals with what was called ‘magic’. One participant attributed her illness to touching the skull of a deceased child. Perhaps as a result of such beliefs, some participants described turning to symbolic or religious treatments, most commonly what was called taking ‘holy water’. Some consulted traditional healers, adding that these practitioners not only required payment but could advise podoconiosis patients against attending the clinic. For one patient, using a herbal product only served to exacerbate his condition: There is one podoconiosis patient who I know in our village. By chance he wanted to use a local treatment and he went to someone who offers that service. They give him a leaf-like traditional medicine and told him to rub it down his leg. After he rubbed his leg with the leaf, his swollen leg burst and created a big wound. Now he can’t walk rather he spends the time in bed (FGD participant, patient association leader, 48 years old).
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Figure 3. A typical rural area of East Gojam zone. This figure is available in black and white in print and in colour at International Health online.
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Occupational, geographic, and financial barriers to access
To get the treatment, I complete a long journey which takes three hours to go and three hours to return. Since the journey is too long, I felt a pain at my leg; therefore, I suffered much on the first round journey, and I slept for consecutive days in a week. As a result of this I decided not to go for the second round of treatment due to the fear of the pain (IDI informant, a 50 year old male patient). Many patients suggested that financial cost was another major reason for discontinued attendance. The complex nature of barriers facing patients was evident in accounts that they found themselves unable to undertake employment and, thus, could not earn sufficient money to pay for the journey to the clinic. Expenses were not confined to transportation alone: when on-going care was necessary, some patients were obliged to rent accommodation close to the clinic in order to attend for daily treatment. Meeting such costs was reported to be particularly problematic for patients from distant regions and for the elderly, leading some to discontinue attendance despite a desire for treatment: There are patients who come from distant woredas. These patients are not economically strong enough to cover the expense of transportation, so attending the follow up becomes difficult for them. Since most of the patients of this disease are older people, they feel acute attack when they travel a long journey. On the other hand, since they are already weakened by the disease, they do not have the finances to cover transportation (FGD participant, patient association leader, 35 years old). A further complication of this was reported to be because some patients had found it necessary to relocate to different parts of the country. Reasons for moving included a search for employment, and following marriage. This was stated to be a particular problem for younger patients seeking casual labour and for newlywed women who were compelled to join their husbands and relocate to regions far from treatment centres. In the latter case, wives were reported to be cautious about approaching their new husbands for transportation costs. It was also suggested that the emergence of transportation barriers could be a direct consequence of an improvement in patient’s symptoms resulting from treatment:
All in all, the multiple practical barriers faced by some patients were reported to lead to a state of demoralization for some patients. That is to say, it was not a single barrier that led to failure to attend, but an overwhelming sensation that the task could not be completed, such that ‘they lose hope and stop the follow up’ (key informant, head of IOCC treatment centre).
Stigma: a barrier to treatment and access Anxiety over stigma was a widely reported barrier to accessing treatment and was described as operating on multiple levels. Patients feared they could be identified by the visible adhesion of soil to their legs that resulted from application of emollients during treatment as well as by wearing bandages or shoes. Similarly, since treatment clinics only served podoconiosis patients, sufferers feared they would be identified simply by attendance. These issues and a belief in the hereditary nature of the disease were reported to compel close relatives to discourage sufferers from seeking treatment, fearing it would lead to stigma against the whole family. Indeed, it was stated that one patient’s wife had threatened to divorce him if he continued to attend the clinic. For one wife with podoconiosis, the solution to this problem was to borrow money in secret from neighbours in order to conceal her attendance at the clinic from her husband. Being identified as a podoconiosis sufferer could elicit widespread discrimination from community members and employers. This led to barriers to subsequent attendance for treatment mediated by failure to access accommodation and basic services, such as water supplies. Behind this was a popular belief that the disease was contagious: Since the awareness of the society towards the disease is very low, we can’t rent a house after coming from far away. Even though we get a house rent, we are not allowed to use basic services like water, toilet, etc. One person who is a government employee has houses for rent. After asking him, I rented his house. On the second day when I came back after a massage and tied my leg with bandage he ordered me to leave his house saying ‘you will transfer this disease to my children’ (IDI informant, a 50 year old male patient). The challenges to tackling this particular problem were highlighted by evidence that such discrimination arose even when houses for patients were booked by IOCC health workers: We IOCC workers tried to solve the problem of house rent by renting a compound for patients, separating males and females. However, the owner of the compound later refused after he was informed that his house would be for podoconiosis patients (FGD participant, treatment centre health agent, 26 years old).
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The main reason for discontinued attendance for treatment was reported to be barriers relating to travelling to the nearest IOCC treatment centre. This was for two reasons. First, because it was stated to be difficult to abandon other commitments such as employment, domestic work (for example, harvesting crops or watching over cattle) and community activities, most commonly to attend funerals. Second, many patients came from rural areas which necessitated arduous walks of many hours, sometimes over mountains and rivers. Such journeys could be made even more problematic as a result of heavy rainfall. Unsurprisingly, the very process of walking such long distances on foot was frequently reported to exacerbate symptoms of podoconiosis, preventing patients from completing their journey or discouraging future attendance:
People who have podoconiosis could not marry and move from place to place to get a job. However, after they get a treatment the swelling of their legs decreases, as a result of this, they begin to move from place to place in order to search for work or a marriage partner. Then they stopped the treatment because a podoconiosis treatment centre may not be found at the place where they moved (FGD participant, patient association leader, 31 years old male).
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Conflicting expectations of treatment
One podoconiosis patient spends at least three days per week and nine days per month in bed with acute attacks. Being in this situation, it becomes very difficult for them to lead their families. Therefore, their focus becomes the acute attack rather than the leg swelling. Since their aim is to become free from acute attacks, they stop the treatment once they are free from them (FGD participant, treatment centre health agent, 29 years old). One patient group for whom symptom improvement could lead directly to discontinuing attendance was people who were beggars. For them, it was evident that visible signs of podoconiosis represented a key income stream and that this could only be maintained through begging for so long as limb swelling remained evident. As a result, treatment of the swelling led some participants to stop their treatment and to return to begging in order to maintain an income: There are some podoconiosis patients who use the disease for begging. When I asked one podoconiosis patient, he said ‘When I began the treatment, the swelling of my leg began to decrease; as a result, my income from begging also decreased. Begging is my source of income. Therefore I do not want to decrease the swelling of my leg or be cured of my disease because it is my source of income. This is the reason I stopped the treatment’ (FGD participant, patient association leader, 30 years old male). Other patients abandoned clinic attendance due to failure to receive wider benefits. Most commonly, dissatisfaction was reported to arise because patients did not receive new footwear on their first visit and, in order to access this, had to attend the clinic for three consecutive months. As a result, the expectation of shoes led some patients not to re-attend after their first visit to the clinic. Likewise, there was disappointment that family members could not obtain medication on behalf of patients. One reason why the services did not fulfill these expectations appeared to lie in concern over how some patients used the shoes and soap provided. Specifically, one project coordinator reported that certain individuals had requested footwear only in order immediately to exchange these for cash. Alongside this, there was reported to be an expectation from some patients that treatment centres should provide more fundamental humanitarian support. This belief was considered to result from the status of the treatment centre as a charity and patients’ previous experience of what was offered by similar organizations:
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Most patients described being satisfied with the attention that they received and a couple of described it as ‘delicious as food’. Alongside calls for more pairs of socks and shoes, participants called for an increased number of clinic attendants and the establishment of additional clinics to serve rural areas. Other than a single report that emollients had run out in one clinic, the only concern reported was that patients who has missed an appointment could be declined further attention.
Discussion This study used interviews with patients, patient association leaders and health care providers to identify a range of reasons why podoconiosis patients in Ethiopia fail to attend for treatment. These barriers take the following form: misconceptions about the cause of the disease, a preference for traditional treatments, stigma among patients and family members, occupational, geographical and financial barriers, considering the lymphoedema as a source of income and expectations of treatment that were not met. The present research builds upon existing evidence that transportation and stigma21 are major reasons why podoconiosis patients in Ethiopia fail to attend for treatment. It adds to this by identifying further barriers and by exploring their complex nature, in particular to show that they frequently interact to create a ‘vicious circle’ that prevents attendance. For example, this occurred where travelling to attend treatment clinics provoked acute attacks of podoconiosis and that improvement in symptoms led some patients to discontinue their treatment. Ultimately, the multiple and complex nature of barriers could produce a situation where some participants became demoralized and disengaged with care. The findings also suggest that podoconiosis sufferers who expect an ‘instant cure’ for their symptoms struggle to comprehend the underlying chronic nature of their condition and the need for long-term treatment. Such a conclusion is consistent with research into the health beliefs of sub-Saharan Africans elsewhere into cardiovascular disease and its need for long-term treatment.24 These findings also contribute to existing knowledge about the health beliefs of podoconiosis patients in Ethiopia by describing the stepwise nature of the barriers that they face in order to access treatment. This approach is consistent with evidence from Europe that the way in which vulnerable patients access formal treatment services consists of multiple stages, from recognizing the illness, approaching health care and the experience of interacting with it.25 Adopting this approach is valuable for two reasons. First, the presence of multiple, consecutive barriers help to explain why most podoconiosis patients in Ethiopia do not utilize formal treatment services. Second, it provides a framework that can be employed to help formulate activities for improving access. In so doing, however, it indicates that reducing barriers at any one point in the pathway from recognizing symptoms to receiving on-going treatment may ultimately not improve
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A further reason for discontinuing treatment lay in expectations about treatment that were not met. This included disappointment over the simple nature of the hygiene package provided and absence of more advanced medical treatments, such as injections. Behind this there was an expectation of a rapid cure such that some patients were reported to be so keen to recover fast that they applied topical products in excessive quantities. This could lead to burning of the skin and discontinuation of treatment. Even when symptoms did improve, this too could contribute to reluctance to re-attend. One reason for this was because patients were reported to be more troubled by disabling acute attacks rather than the on-going symptoms of swelling that are targeted during the treatment process:
Since patients are considering this as a charity organization, there are some patients who ask us for money, wheat, oil and etc. There is a women who I remember her in Debre Markos town that non-governmental organizations gave her different support, when she came here, she expecting that. Unless she do not get what she expected here, she stop coming (key informant, IOCC project coordinator).
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Conclusions This study has identified and explored a range of barriers to accessing treatment for podoconiosis in Ethiopia. The findings underline the scale of the challenges facing health care professionals and service planners in Ethiopia who must tackle podoconiosis. A range of possible activities to address these barriers has been proposed here. While some of these interventions may appear to be achievable, the findings from the present study suggest that significant improvement in engagement will only result from improvement in barriers across the pathway presented here. Expansion of treatment centres and integrating the service with the current health system in local areas is one strategy that may help to reduce many of these barriers for the most vulnerable patients groups. Nevertheless, additional practical problems could emerge by implementing such a change. As a result, further research is required before these interventions are implemented. As most podoconiosis patients are very poor rural farmers1,7 this study builds upon evidence that not only is the emergence of the disease closely related with poverty6 but that this remains the underlying factor that hinders patients’ ability to implement affordable preventive measures (e.g., shoe wearing) and to utilise treatment services. This conclusion would explain why podoconiosis patients who find themselves faced with multiple barriers to accessing care are likely to adopt a pluralist approach to care by trying a range of traditional treatments instead. This observation also points to the conclusion that solutions will ultimately lie with wider activities to tackle socioeconomic deprivation among rural communities.
Authors’ contributions: GD and GT conceived the study; GD, AT, GT and MW implemented the study; MC, GD and GT, performed data analysis and quality assurance. All authors read and approved the final manuscript. GT is the guarantor of the paper. Acknowledgements: We wish to thank the Association of Physicians of Great Britain & Northern Ireland for funding this study and we thank individuals who participated in the study. We would also like to acknowledge all IOCC staff members who gave us great support during the data collection. Funding: This research was funded by the Association of Physicians of Great Britain & Northern Ireland. Competing interests: None declared. Ethical approval: The study was approved by the ethical review boards at the scientific committee at Debre Markos University, and the Research Governance and Ethics Committee at Brighton and Sussex Medical School, UK.
References 1 Davey G. Podoconiosis: let Ethiopia lead the way. Ethiopi J Health Dev 2008;22:1–2. 2 Davey G, Tekola F, Newport MJ. Podoconiosis: non-infectious geochemical elephantiasis. Trans R Soc Trop Med Hyg 2007;101: 1175–80.
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engagement with treatment services unless other barriers are also addressed. A further reason for this is because key social and economic factors (such as stigma and poverty) impede patient engagement across multiple stages of this trajectory. This study, therefore, suggests that prevention and treatment of podoconiosis can only be achieved through multiple interventions that target all the areas where barriers were described. Such an approach could include the following activities: first, the use of expert patients to promote health literacy about the disease. As well as increasing understanding of prevention and treatment, this could facilitate early recognition of podoconiosis symptoms and signs by patients. Central to this is a need to promote treatment-seeking soon after the onset of symptoms, when intervention may be more effective and acute attacks less likely to hinder attendance. This approach could also tackle stigma by addressing the popular belief that the condition is contagious. Expert patients could help to shape expectations about the nature of treatments and inform communities about specific services on offer in clinics. Such individuals could also be used to inform traditional healers about the disease and the need for early referral to treatment centers. Second, by expanding the role of family members of severely affected patients, in particular by permitting collection of supplies for self-treatment at home. Third, the introduction of means-based reimbursement of transport fees for selected patients from rural areas. Fourth, the development of dedicated residential accommodation close to treatment centres for patients who are elderly, from distant areas or requiring an extended course of treatment. A fifth strategy is introducing delivery of treatment through existing state health care clinics in rural areas in order to reach remote communities. This might incorporate outreach services to high risk areas in order to increase awareness of how to prevent, recognize and treat the symptoms and signs of podoconiosis. Such interventions need to be undertaken in ways that are sensitive to the sociocultural, religious, economic and political context where podoconiosis patients live and work. That calls for further qualitative research to explore the feasibility of these activities as well as to examine in greater depth how people currently learn about podoconiosis, including through formal health promotion and the presentation of the condition in the popular media. Finally, this study points to the importance of acute attacks in preventing sufferers from undertaking employment and attending for clinical care. The most effective means of preventing acute attacks remains foot hygiene treatment and indicates a need for further interventions to promote such behavior among patients who struggle to attend clinics. Further research is also required to examine the place of affordable medication in preventing or treating such symptoms, for example by using paracetamol or non-steroidal anti-inflammatory drugs. Specifically, these might have an expanded role through use prior to journeys on foot to attend the podoconiosis clinic. This study is limited by its focus upon participants’ reported beliefs and experiences rather than observation of actual behaviors and interactions. A further issue is that patient responses may have been influenced by their perception of the researchers, for example leading to socially acceptable answers such as not wishing to criticise healthcare services. Finally, although every attempt was made to promote accurate interpretation of participant responses, it is possible that this may have failed to capture in English their full cultural significance.
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3 Destas K, Ashine M, Davey G. Prevalence of podoconiosis (endemic non-filarial elephantiasis) in Wolaitta, Southern Ethiopia. Trop Doct 2002;33:217–20.
15 Rodgers PT, Ruffin DM. Medication nonadherence: part II–a pilot study in patients with congestive heart failure. Manag Care Interface 1998;11:67–9,75.
4 Molla YB, Tomczyk S, Amberbir T et al. Podoconiosis in east and west Gojam zones, Northern Ethiopia. PLoS Negl Trop Dis 2012;6(7):e1744.
16 Roura M, Busza J, Wringe A et al. Barriers to sustaining antiretroviral treatment in Kisesa, Tanzania: a follow-up study to understand attrition from the antiretroviral programme. AIDS Patient Care STDS 2009;23:1–8.
5 Ayode D, McBride CM, de Heer HD et al. G. A qualitative study exploring barriers to use of footwear in highland Ethiopia: implications for neglected tropical disease control. PLoS Negl Trop Dis 2013;7(4):e2199.
17 Amberbir A, Woldemichael K, Getachew S et al. Predictors of adherence to antiretroviral therapy among HIV-infected persons: a prospective study in southwest Ethiopia. BMC Public Health 2008;8:265. doi:10.1186/1471-2458-8-265.
7 Tekola F, Mariam DH, Davey G. Economic costs of endemic non-filarial elephantiasis in Wolaita Zone, Ethiopia. Trop Med Int Health 2006;11: 1136–44.
18 Reda A, Biadgilign S. Determinants of adherence to antiretroviral therapy among HIV-infected patients in Africa. AIDS Res Treat 2012, Volume 2012, 8 pages doi:10.1155/2012/574656.
8 Yakob B, Deribe K, Davey G. High levels of misconceptions and stigma in a community highly endemic for podoconiosis in southern Ethiopia. Trans R Soc Trop Med Hyg 2008;102:439–44.
19 Fielding D, Duff A. Compliance with treatment protocols: interventions for children with chronic illness. Arch Dis Child 1999;80:196–200.
9 Sikorski C, Ashine M, Zeleke Z, Davey G. Effectiveness of a simple lymphoedema treatment regimen in podoconiosis management in southern ethiopia: one year follow-up. PLoS Negl Trop Dis 2010; 4(11):e902. 10 Davey G, Burridge E. Community-based control of a neglected tropical disease: The Mossy Foot Treatment and Prevention Association. PLoS Negl Trop Dis 2009;3(5):e424. 11 Sikorski C, Ashine M, Zeleke Z, Davey G. Effectiveness of a simple lymphoedema treatment regimen in podoconiosis management in southern Ethiopia: one year follow-up. PLoS Negl Trop Dis 2010; 4(11):e902. 12 Tekola F, Ayele Z, Hailemariam D et al. Development and testing of a de novo staging system for podoconiosis. Trop Med Int Health 2008; 13:1277–83. 13 WHO. Adherence to long-term therapies: evidence for action. Geneva: World Health Organization; 2012. www.who.int/hiv/pub/prev_care/ lttherapies/en/index.html [accessed 26 September 2013]. 14 Wood B. Medication adherence: the real problem when treating chronic conditions. US Pharm 2012;37(4 Compliance Suppl):S3–6.
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20 Tekola F, Bull SJ, Farsides B et al. Tailoring consent to context: designing an appropriate consent process for a biomedical study in a low income setting. PLoS Negl Trop Dis 2009;3(7):e482. 21 Tora A, Davey G, Getnet T. Factors related to discontinued clinic attendance by patients with podoconiosis in southern Ethiopia: a qualitative study. BMC Public Health 2012;12:9. 22 Ethiopian Central Statistical Agency EthioInfo. 2007. http://www.csa. gov.et/ [accessed 25 September 2013]. 23 Central Statistical Agency. Summary and Statistical Report of the 2007 Population and Housing Census Results. Federal Democratic Republic of Ethiopia: Population Census Commission; 2008. 24 Aikins A, Boynton P, Atanga L. Developing effective chronic disease interventions in Africa: insights from Ghana and Cameroon. Global Health 2010;6. http://www.globalizationandhealth.com/content/6/1/6 [accessed 25 September 2013]. 25 Dixon-Woods M, Cavers D, Agarwal S et al. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Med Res Methodol 2006;6:35. http://www. biomedcentral.com/1471-2288/6/35 [accessed 23 September 2013].
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6 Alemu G, Ayele FT, Daniel T et al. Burden of podoconiosis in poor rural communities in Gulliso Woreda, West Ethiopia. PLoS Neglected Tropical Diseases 2011;5(6):e1184.
ORIGINAL ARTICLE
Int Health 2015; 7: 285–292 doi:10.1093/inthealth/ihu085 Advance Access publication 23 December 2014
College of Medicine and Health Sciences, Debre Markos University, Debre Markos, Ethiopia; bInternational Orthodox Christian Charities, Debre Markos, Ethiopia; cBrighton and Sussex Medical School, Brighton, UK
Received 1 February 2014; revised 7 September 2014; accepted 11 September 2014 Background: Podoconiosis is a chronic non-infectious lymphoedema affecting individuals exposed to red clay soil in endemic areas. Evidence from International Orthodox Christian Charities (IOCC) treatment centers’ registers suggests that a significant proportion of registered patients with podoconiosis fail to re-attend for treatment, putting them at risk of worsening disability associated with the lymphoedema and attacks of acute adenolymphangitis. The aim of this study was to explore barriers to access and re-attendance of patients with podoconiosis in northern Ethiopia. Methods: A cross-sectional qualitative study was conducted at three IOCC treatment sites from February to April 2013. Twenty-eight patients and three project leaders took part in in-depth interviews. Three focus group discussions were undertaken with 22 patients, patient association leaders and project staff members. Results: Barriers to access and to continued attendance at treatment centers were recognized by all participant groups. The following reasons were reported: lay beliefs about the disease’s causation and presentation, occupational, geographic and financial barriers, stigma and conflicting expectations of treatment services. Conclusions: This study illustrates the multiple, step-wise barriers to accessing treatment faced by podoconiosis patients. These factors are dynamic, frequently interact and result from competing social and economic priorities. Keywords: Continuity of care, East and West Gojam Zone, Ethiopia, Podoconiosis
Background Podoconiosis is a chronic non-infectious disease affecting individuals exposed to red clay soil in the tropical highlands. It is found in areas of irritant soils, high altitude, high rainfall, and predominantly in low socioeconomic communities, where subsistence farmers often struggle to afford shoes, socks, or water to wash their feet.1,2 Worldwide, an estimated 4 million people have podoconiosis. In endemic areas 5–10% of the population may be affected by podoconiosis.3 Approximately 1 million people are affected by the disease in Ethiopia.4,5 Early symptoms commonly include itching of the skin of the forefoot and a burning sensation in the foot and lower leg. Early changes that may be observed are splaying of the forefoot, plantar oedema with lymph ooze, increased skin markings, hyperkeratosis with the formation of moss-like papillomata, and ‘block’ (rigid) toes. The ‘mossy’ changes predominate in a slipper pattern around the heel and border of the foot, reflecting the distribution of underlying superficial lymphatics. Later, the swelling may be soft and fluid (‘water-bag’ type) or hard and fibrotic (‘leathery’ type), often associated with multiple hard skin nodules (Figure 1),
or intermediate with both sets of features. Acute episodes (acute adenolymphangitis [ALA]) occur on average five times per year, and patients become pyrexial with a warm, painful limb, necessitating on average 4.5 days off work each episode.4,6 The economic and social consequences of this disease burden are severe.6 It is estimated that patients lose up to 45% of working days per year due to podoconiosis.7 Stigmatization of people with podoconiosis is pronounced and patients are often excluded from school, local meetings, churches and mosques.8 Podoconiosis can be completely prevented by simple measures. Primary prevention includes avoiding irritant soil exposure by wearing shoes, and foot hygiene. Secondary and tertiary prevention also includes the use of shoes, and foot hygiene.8–13 The highland districts of Amhara Region make up one region with a significant podoconiosis disease burden. In 2010, International Orthodox Christian Charities (IOCC) started a program to prevent, treat and control podoconiosis in East and West Gojam zones, Amhara Region. Evidence from IOCC treatment centers’ registers suggests that a significant proportion of registered patients with podoconiosis fail to reattend or to collect supplies for ongoing treatment. At the time the study was started, the
# The Author 2014. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. All rights reserved. For permissions, please e-mail: [email protected].
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*Corresponding author: E-mail: [email protected]
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whether podoconiosis patients in northern Ethiopia experienced similar difficulties and what other factors they considered to be major barriers to initial and continued treatment.
Methods Study area
discontinuation rate was about 8% of patients registered at any one time. According to WHO ‘adherence’ is the term used in health care to describe the extent to which a person’s behavior–taking medication, following a diet, or executing lifestyle changes–corresponds with agreed recommendations from a health care provider.14,15 Several studies indicate that poor adherence to appropriate therapy for chronic conditions results in complications and increased health care costs.16–18 In developing countries, like Ethiopia, when poor access to health care, possible lack of diagnosis, and limited availability of medications are taken into account, poor adherence undermines efforts to treat chronic conditions.19,20 Complex socioeconomic, demographic and psychological factors have been reported in various studies to affect adherence to medication therapy of chronic diseases.20 Studies have been carried out to identify factors related to discontinued collection of treatment supplies by podoconiosis patients in Ethiopia. We use an operational definition of non-attendance for collection of one or more months’ treatment supplies as representing ‘discontinued treatment’. One study conducted in the southern part of Ethiopia showed that discontinuation of clinic visits was common among podoconiosis patients. The main reasons given were: remoteness from the clinic sites, unrealistic expectation of ‘special’ aid (material or financial benefits in addition to medical treatment), concern about increasing stigma, recurrent bouts of illness and misconceptions about treatment (such as failure to experience rapid relief of symptoms).20,21 We aimed to explore
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Study design and sampling We conducted a qualitative study using in-depth interviews (IDIs), focus group discussions (FGDs) and key informant interviews (KIIs). Three of six IOCC treatment centres were purposively selected to include patients with a wide range in follow-up duration. We used purposive sampling techniques to recruit study subjects into IDI and FGD groups. Twenty-eight podoconiosis patients took part in IDIs. The IOCC project director, field officer and treatment centre head participated in KIIs as they have an on-going relationship with many patients. Having identified FGD participants with the help of treatment centre staff, we grouped them into three categories: podoconiosis patients, treatment center health agents/social workers, and patient association leaders. Each group was composed of eight participants except for treatment centre staff and social workers, who numbered six, thus giving a total of 22 participants. Data collection continued until no new themes emerged from further interviews.
Data collection Data collection was conducted over a 4 week period in March 2013 by native speakers of Amharic, the local language. Three
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Figure 1. Symmetrical swelling in a male patient from Wolaita, southern Ethiopia, who gave oral consent in 2008 for his photo to be used. This figure is available in black and white in print and in colour at International Health online.
The study was conducted in East and West Gojam zones, Amhara Region. The Region is located in the northwestern part of Ethiopia and its land area is estimated to be 170 000 km2. Amhara Region borders Tigray in the north, Afar in the east, Oromiya in the south, Benishangul-Gumiz in the southwest and the country of Sudan in the west. The region is made up of subsistence farms and grazing fields among highland plateaux and valleys.22 East Gojam zone has a total population of approximately 2 153 937 persons and an area of 14 004.47 km2. West Gojam zone has a total population of 2 106 596 persons and an areaof13 311.94 km2.23 IOCCofferstreatment in six sites (Debre Markos, Guay, Debre Elias, Emanuel, Wade and Dembecha): one in West Gojam zone and five in East Gojam zone. The study included the following ‘woredas’ (districts): Debre Markos, Guay, Debre Elias, Emanuel and Dembecha. Debre Markos is the capital city of East Gojam zone, and Finote Selam is the capital city of West Gojam zone. According to an IOCC report 6128 patients attended during the study period, of whom 1612 were from Yejube, 613 from Debre Markos, 490 from Debre Elias, 1102 from Dembecha, 1163 from Amanuel and 1148 from Wade. A map of Ethiopia showing the study area is shown in Figure 2. Most Ethiopians still rely on pack animals and carrying loads on their own heads and backs to transport goods to market. Approximately 64% of the land area in Ethiopia lies more than 5 km from an all-weather road; some 48 million people in the rural areas of Ethiopia live further than 2 km away from the nearest all weather road. On average, households are often more than 10 km away from a dry-weather road and 18 km away from public transport services.24 A photo showing a typical rural area of East Gojam is presented in Figure 3.
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types of unstructured, pilot tested interview guides were used to conduct FGDs, KIIs and IDIs. In-depth interview informants were approached at their homes through patient association leaders, while patients already attending for treatment were contacted on the days scheduled and asked to indicate whether they had experienced any problems in attending for treatment. We defined any patient not attending clinic on one or more scheduled occasion(s) as experiencing discontinuation of treatment. Those who had missed collecting treatment supplies were interviewed to establish what reasons might have contributed. Treatment centre staff arranged a private setting where interviews were held with each informant for about 20 to 30 minutes. Focus group discussion participants were asked why they thought patients might not attend the treatment centre, while key informants and treatment centre health agents were also asked how consistent patients were in collecting treatment. Discussions in all focus groups were held in neighbouring homes where the recruited participants gathered for about 1.5 hours. An experienced note-taker was hired to take notes during individual interviews and FGDs. Audio recording was also used with prior consent of the informants. A unique identifying number was given to all informants in advance to link the data obtained through interviews and FGDs.
Data analysis Field notes and audio files of interviews and FGDs were transcribed in the local language. Amharic was used during data collection and checked for accuracy through repeated playing of the audio files and scrutiny of the field notes. Unique identifying numbers and demographic variables assigned to each informant during data collection were linked to the data during transcription and names of specific people mentioned in the transcript were removed. A meaning-based translation of transcripts was made. The text data typed into the word file were organized using manual coding techniques to code and categorize related themes. To increase the validity of this, three coders were involved to organize the data based on themes from the interview guides and themes derived from the data. The coders resolved overlapping themes and inconsistencies in data sources through regular meetings, and incorporated additional themes suggested through discussion.
Ethical considerations The study participants were recruited once they were fully aware of the purpose of the study and the methods of data collection. They
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Figure 2. Map of Ethiopia showing position of East and West Gojam zones. This figure is available in black and white in print and in colour at International Health online.
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were asked to provide witnessed oral consent rather than written consent to participate in the study, since most of the participants were illiterate. Potential participants were clearly informed that they had a right to stop the interview at any time or to skip questions they did not want to answer. They were also told that interviews would be held in a private place and that identifiable data would not be viewed by any third party except the principal investigators. Permission was also gained from the IOCC since all of the study subjects were approached through the organization’s treatment centres. The scientific committee at Debre Markos University, and the Research Governance and Ethics Committee at Brighton and Sussex Medical School approved this study.
Results Characteristics of the study population A total of 53 participants were interviewed, comprising the following: patients (17 male and 19 females, patient association leaders (6 male and 2 female) and health care providers (6 male and 3 female). The mean age of the participants was 40 years (range 20 to 65 years). Most participants who were patients were rural dwellers, married and unable to read or write.
Barriers arising from beliefs about the origin and nature of podoconiosis The onset of the illness was described by patients in terms of pain followed by swelling, ‘rheumatism’, ‘chills’ and cracks in the feet. Complications of podoconiosis included wounds and recurrent acute attacks that could confine patients to bed for weeks,
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preventing them from attending for treatment. It was reported that malaria and unspecified ‘severe’ inter-current illnesses were more likely to arise as a result of having podoconiosis and to confine the sufferer to home. Most patients reported learning about the clinic services through word of mouth or from community leaders. Participants reported a range of explanatory models for podoconiosis that were physical (a leg becoming ‘dirty’ or being injured), climatic (commonly attributed to exposure to sunlight), familial or symbolic in nature. Symbolic explanations included punishment from God, the result of a curse or the consequence of walking barefoot over fresh blood or other objects that had been left intentionally in the road to target individuals with what was called ‘magic’. One participant attributed her illness to touching the skull of a deceased child. Perhaps as a result of such beliefs, some participants described turning to symbolic or religious treatments, most commonly what was called taking ‘holy water’. Some consulted traditional healers, adding that these practitioners not only required payment but could advise podoconiosis patients against attending the clinic. For one patient, using a herbal product only served to exacerbate his condition: There is one podoconiosis patient who I know in our village. By chance he wanted to use a local treatment and he went to someone who offers that service. They give him a leaf-like traditional medicine and told him to rub it down his leg. After he rubbed his leg with the leaf, his swollen leg burst and created a big wound. Now he can’t walk rather he spends the time in bed (FGD participant, patient association leader, 48 years old).
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Figure 3. A typical rural area of East Gojam zone. This figure is available in black and white in print and in colour at International Health online.
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Occupational, geographic, and financial barriers to access
To get the treatment, I complete a long journey which takes three hours to go and three hours to return. Since the journey is too long, I felt a pain at my leg; therefore, I suffered much on the first round journey, and I slept for consecutive days in a week. As a result of this I decided not to go for the second round of treatment due to the fear of the pain (IDI informant, a 50 year old male patient). Many patients suggested that financial cost was another major reason for discontinued attendance. The complex nature of barriers facing patients was evident in accounts that they found themselves unable to undertake employment and, thus, could not earn sufficient money to pay for the journey to the clinic. Expenses were not confined to transportation alone: when on-going care was necessary, some patients were obliged to rent accommodation close to the clinic in order to attend for daily treatment. Meeting such costs was reported to be particularly problematic for patients from distant regions and for the elderly, leading some to discontinue attendance despite a desire for treatment: There are patients who come from distant woredas. These patients are not economically strong enough to cover the expense of transportation, so attending the follow up becomes difficult for them. Since most of the patients of this disease are older people, they feel acute attack when they travel a long journey. On the other hand, since they are already weakened by the disease, they do not have the finances to cover transportation (FGD participant, patient association leader, 35 years old). A further complication of this was reported to be because some patients had found it necessary to relocate to different parts of the country. Reasons for moving included a search for employment, and following marriage. This was stated to be a particular problem for younger patients seeking casual labour and for newlywed women who were compelled to join their husbands and relocate to regions far from treatment centres. In the latter case, wives were reported to be cautious about approaching their new husbands for transportation costs. It was also suggested that the emergence of transportation barriers could be a direct consequence of an improvement in patient’s symptoms resulting from treatment:
All in all, the multiple practical barriers faced by some patients were reported to lead to a state of demoralization for some patients. That is to say, it was not a single barrier that led to failure to attend, but an overwhelming sensation that the task could not be completed, such that ‘they lose hope and stop the follow up’ (key informant, head of IOCC treatment centre).
Stigma: a barrier to treatment and access Anxiety over stigma was a widely reported barrier to accessing treatment and was described as operating on multiple levels. Patients feared they could be identified by the visible adhesion of soil to their legs that resulted from application of emollients during treatment as well as by wearing bandages or shoes. Similarly, since treatment clinics only served podoconiosis patients, sufferers feared they would be identified simply by attendance. These issues and a belief in the hereditary nature of the disease were reported to compel close relatives to discourage sufferers from seeking treatment, fearing it would lead to stigma against the whole family. Indeed, it was stated that one patient’s wife had threatened to divorce him if he continued to attend the clinic. For one wife with podoconiosis, the solution to this problem was to borrow money in secret from neighbours in order to conceal her attendance at the clinic from her husband. Being identified as a podoconiosis sufferer could elicit widespread discrimination from community members and employers. This led to barriers to subsequent attendance for treatment mediated by failure to access accommodation and basic services, such as water supplies. Behind this was a popular belief that the disease was contagious: Since the awareness of the society towards the disease is very low, we can’t rent a house after coming from far away. Even though we get a house rent, we are not allowed to use basic services like water, toilet, etc. One person who is a government employee has houses for rent. After asking him, I rented his house. On the second day when I came back after a massage and tied my leg with bandage he ordered me to leave his house saying ‘you will transfer this disease to my children’ (IDI informant, a 50 year old male patient). The challenges to tackling this particular problem were highlighted by evidence that such discrimination arose even when houses for patients were booked by IOCC health workers: We IOCC workers tried to solve the problem of house rent by renting a compound for patients, separating males and females. However, the owner of the compound later refused after he was informed that his house would be for podoconiosis patients (FGD participant, treatment centre health agent, 26 years old).
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The main reason for discontinued attendance for treatment was reported to be barriers relating to travelling to the nearest IOCC treatment centre. This was for two reasons. First, because it was stated to be difficult to abandon other commitments such as employment, domestic work (for example, harvesting crops or watching over cattle) and community activities, most commonly to attend funerals. Second, many patients came from rural areas which necessitated arduous walks of many hours, sometimes over mountains and rivers. Such journeys could be made even more problematic as a result of heavy rainfall. Unsurprisingly, the very process of walking such long distances on foot was frequently reported to exacerbate symptoms of podoconiosis, preventing patients from completing their journey or discouraging future attendance:
People who have podoconiosis could not marry and move from place to place to get a job. However, after they get a treatment the swelling of their legs decreases, as a result of this, they begin to move from place to place in order to search for work or a marriage partner. Then they stopped the treatment because a podoconiosis treatment centre may not be found at the place where they moved (FGD participant, patient association leader, 31 years old male).
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Conflicting expectations of treatment
One podoconiosis patient spends at least three days per week and nine days per month in bed with acute attacks. Being in this situation, it becomes very difficult for them to lead their families. Therefore, their focus becomes the acute attack rather than the leg swelling. Since their aim is to become free from acute attacks, they stop the treatment once they are free from them (FGD participant, treatment centre health agent, 29 years old). One patient group for whom symptom improvement could lead directly to discontinuing attendance was people who were beggars. For them, it was evident that visible signs of podoconiosis represented a key income stream and that this could only be maintained through begging for so long as limb swelling remained evident. As a result, treatment of the swelling led some participants to stop their treatment and to return to begging in order to maintain an income: There are some podoconiosis patients who use the disease for begging. When I asked one podoconiosis patient, he said ‘When I began the treatment, the swelling of my leg began to decrease; as a result, my income from begging also decreased. Begging is my source of income. Therefore I do not want to decrease the swelling of my leg or be cured of my disease because it is my source of income. This is the reason I stopped the treatment’ (FGD participant, patient association leader, 30 years old male). Other patients abandoned clinic attendance due to failure to receive wider benefits. Most commonly, dissatisfaction was reported to arise because patients did not receive new footwear on their first visit and, in order to access this, had to attend the clinic for three consecutive months. As a result, the expectation of shoes led some patients not to re-attend after their first visit to the clinic. Likewise, there was disappointment that family members could not obtain medication on behalf of patients. One reason why the services did not fulfill these expectations appeared to lie in concern over how some patients used the shoes and soap provided. Specifically, one project coordinator reported that certain individuals had requested footwear only in order immediately to exchange these for cash. Alongside this, there was reported to be an expectation from some patients that treatment centres should provide more fundamental humanitarian support. This belief was considered to result from the status of the treatment centre as a charity and patients’ previous experience of what was offered by similar organizations:
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Most patients described being satisfied with the attention that they received and a couple of described it as ‘delicious as food’. Alongside calls for more pairs of socks and shoes, participants called for an increased number of clinic attendants and the establishment of additional clinics to serve rural areas. Other than a single report that emollients had run out in one clinic, the only concern reported was that patients who has missed an appointment could be declined further attention.
Discussion This study used interviews with patients, patient association leaders and health care providers to identify a range of reasons why podoconiosis patients in Ethiopia fail to attend for treatment. These barriers take the following form: misconceptions about the cause of the disease, a preference for traditional treatments, stigma among patients and family members, occupational, geographical and financial barriers, considering the lymphoedema as a source of income and expectations of treatment that were not met. The present research builds upon existing evidence that transportation and stigma21 are major reasons why podoconiosis patients in Ethiopia fail to attend for treatment. It adds to this by identifying further barriers and by exploring their complex nature, in particular to show that they frequently interact to create a ‘vicious circle’ that prevents attendance. For example, this occurred where travelling to attend treatment clinics provoked acute attacks of podoconiosis and that improvement in symptoms led some patients to discontinue their treatment. Ultimately, the multiple and complex nature of barriers could produce a situation where some participants became demoralized and disengaged with care. The findings also suggest that podoconiosis sufferers who expect an ‘instant cure’ for their symptoms struggle to comprehend the underlying chronic nature of their condition and the need for long-term treatment. Such a conclusion is consistent with research into the health beliefs of sub-Saharan Africans elsewhere into cardiovascular disease and its need for long-term treatment.24 These findings also contribute to existing knowledge about the health beliefs of podoconiosis patients in Ethiopia by describing the stepwise nature of the barriers that they face in order to access treatment. This approach is consistent with evidence from Europe that the way in which vulnerable patients access formal treatment services consists of multiple stages, from recognizing the illness, approaching health care and the experience of interacting with it.25 Adopting this approach is valuable for two reasons. First, the presence of multiple, consecutive barriers help to explain why most podoconiosis patients in Ethiopia do not utilize formal treatment services. Second, it provides a framework that can be employed to help formulate activities for improving access. In so doing, however, it indicates that reducing barriers at any one point in the pathway from recognizing symptoms to receiving on-going treatment may ultimately not improve
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A further reason for discontinuing treatment lay in expectations about treatment that were not met. This included disappointment over the simple nature of the hygiene package provided and absence of more advanced medical treatments, such as injections. Behind this there was an expectation of a rapid cure such that some patients were reported to be so keen to recover fast that they applied topical products in excessive quantities. This could lead to burning of the skin and discontinuation of treatment. Even when symptoms did improve, this too could contribute to reluctance to re-attend. One reason for this was because patients were reported to be more troubled by disabling acute attacks rather than the on-going symptoms of swelling that are targeted during the treatment process:
Since patients are considering this as a charity organization, there are some patients who ask us for money, wheat, oil and etc. There is a women who I remember her in Debre Markos town that non-governmental organizations gave her different support, when she came here, she expecting that. Unless she do not get what she expected here, she stop coming (key informant, IOCC project coordinator).
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Conclusions This study has identified and explored a range of barriers to accessing treatment for podoconiosis in Ethiopia. The findings underline the scale of the challenges facing health care professionals and service planners in Ethiopia who must tackle podoconiosis. A range of possible activities to address these barriers has been proposed here. While some of these interventions may appear to be achievable, the findings from the present study suggest that significant improvement in engagement will only result from improvement in barriers across the pathway presented here. Expansion of treatment centres and integrating the service with the current health system in local areas is one strategy that may help to reduce many of these barriers for the most vulnerable patients groups. Nevertheless, additional practical problems could emerge by implementing such a change. As a result, further research is required before these interventions are implemented. As most podoconiosis patients are very poor rural farmers1,7 this study builds upon evidence that not only is the emergence of the disease closely related with poverty6 but that this remains the underlying factor that hinders patients’ ability to implement affordable preventive measures (e.g., shoe wearing) and to utilise treatment services. This conclusion would explain why podoconiosis patients who find themselves faced with multiple barriers to accessing care are likely to adopt a pluralist approach to care by trying a range of traditional treatments instead. This observation also points to the conclusion that solutions will ultimately lie with wider activities to tackle socioeconomic deprivation among rural communities.
Authors’ contributions: GD and GT conceived the study; GD, AT, GT and MW implemented the study; MC, GD and GT, performed data analysis and quality assurance. All authors read and approved the final manuscript. GT is the guarantor of the paper. Acknowledgements: We wish to thank the Association of Physicians of Great Britain & Northern Ireland for funding this study and we thank individuals who participated in the study. We would also like to acknowledge all IOCC staff members who gave us great support during the data collection. Funding: This research was funded by the Association of Physicians of Great Britain & Northern Ireland. Competing interests: None declared. Ethical approval: The study was approved by the ethical review boards at the scientific committee at Debre Markos University, and the Research Governance and Ethics Committee at Brighton and Sussex Medical School, UK.
References 1 Davey G. Podoconiosis: let Ethiopia lead the way. Ethiopi J Health Dev 2008;22:1–2. 2 Davey G, Tekola F, Newport MJ. Podoconiosis: non-infectious geochemical elephantiasis. Trans R Soc Trop Med Hyg 2007;101: 1175–80.
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engagement with treatment services unless other barriers are also addressed. A further reason for this is because key social and economic factors (such as stigma and poverty) impede patient engagement across multiple stages of this trajectory. This study, therefore, suggests that prevention and treatment of podoconiosis can only be achieved through multiple interventions that target all the areas where barriers were described. Such an approach could include the following activities: first, the use of expert patients to promote health literacy about the disease. As well as increasing understanding of prevention and treatment, this could facilitate early recognition of podoconiosis symptoms and signs by patients. Central to this is a need to promote treatment-seeking soon after the onset of symptoms, when intervention may be more effective and acute attacks less likely to hinder attendance. This approach could also tackle stigma by addressing the popular belief that the condition is contagious. Expert patients could help to shape expectations about the nature of treatments and inform communities about specific services on offer in clinics. Such individuals could also be used to inform traditional healers about the disease and the need for early referral to treatment centers. Second, by expanding the role of family members of severely affected patients, in particular by permitting collection of supplies for self-treatment at home. Third, the introduction of means-based reimbursement of transport fees for selected patients from rural areas. Fourth, the development of dedicated residential accommodation close to treatment centres for patients who are elderly, from distant areas or requiring an extended course of treatment. A fifth strategy is introducing delivery of treatment through existing state health care clinics in rural areas in order to reach remote communities. This might incorporate outreach services to high risk areas in order to increase awareness of how to prevent, recognize and treat the symptoms and signs of podoconiosis. Such interventions need to be undertaken in ways that are sensitive to the sociocultural, religious, economic and political context where podoconiosis patients live and work. That calls for further qualitative research to explore the feasibility of these activities as well as to examine in greater depth how people currently learn about podoconiosis, including through formal health promotion and the presentation of the condition in the popular media. Finally, this study points to the importance of acute attacks in preventing sufferers from undertaking employment and attending for clinical care. The most effective means of preventing acute attacks remains foot hygiene treatment and indicates a need for further interventions to promote such behavior among patients who struggle to attend clinics. Further research is also required to examine the place of affordable medication in preventing or treating such symptoms, for example by using paracetamol or non-steroidal anti-inflammatory drugs. Specifically, these might have an expanded role through use prior to journeys on foot to attend the podoconiosis clinic. This study is limited by its focus upon participants’ reported beliefs and experiences rather than observation of actual behaviors and interactions. A further issue is that patient responses may have been influenced by their perception of the researchers, for example leading to socially acceptable answers such as not wishing to criticise healthcare services. Finally, although every attempt was made to promote accurate interpretation of participant responses, it is possible that this may have failed to capture in English their full cultural significance.
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3 Destas K, Ashine M, Davey G. Prevalence of podoconiosis (endemic non-filarial elephantiasis) in Wolaitta, Southern Ethiopia. Trop Doct 2002;33:217–20.
15 Rodgers PT, Ruffin DM. Medication nonadherence: part II–a pilot study in patients with congestive heart failure. Manag Care Interface 1998;11:67–9,75.
4 Molla YB, Tomczyk S, Amberbir T et al. Podoconiosis in east and west Gojam zones, Northern Ethiopia. PLoS Negl Trop Dis 2012;6(7):e1744.
16 Roura M, Busza J, Wringe A et al. Barriers to sustaining antiretroviral treatment in Kisesa, Tanzania: a follow-up study to understand attrition from the antiretroviral programme. AIDS Patient Care STDS 2009;23:1–8.
5 Ayode D, McBride CM, de Heer HD et al. G. A qualitative study exploring barriers to use of footwear in highland Ethiopia: implications for neglected tropical disease control. PLoS Negl Trop Dis 2013;7(4):e2199.
17 Amberbir A, Woldemichael K, Getachew S et al. Predictors of adherence to antiretroviral therapy among HIV-infected persons: a prospective study in southwest Ethiopia. BMC Public Health 2008;8:265. doi:10.1186/1471-2458-8-265.
7 Tekola F, Mariam DH, Davey G. Economic costs of endemic non-filarial elephantiasis in Wolaita Zone, Ethiopia. Trop Med Int Health 2006;11: 1136–44.
18 Reda A, Biadgilign S. Determinants of adherence to antiretroviral therapy among HIV-infected patients in Africa. AIDS Res Treat 2012, Volume 2012, 8 pages doi:10.1155/2012/574656.
8 Yakob B, Deribe K, Davey G. High levels of misconceptions and stigma in a community highly endemic for podoconiosis in southern Ethiopia. Trans R Soc Trop Med Hyg 2008;102:439–44.
19 Fielding D, Duff A. Compliance with treatment protocols: interventions for children with chronic illness. Arch Dis Child 1999;80:196–200.
9 Sikorski C, Ashine M, Zeleke Z, Davey G. Effectiveness of a simple lymphoedema treatment regimen in podoconiosis management in southern ethiopia: one year follow-up. PLoS Negl Trop Dis 2010; 4(11):e902. 10 Davey G, Burridge E. Community-based control of a neglected tropical disease: The Mossy Foot Treatment and Prevention Association. PLoS Negl Trop Dis 2009;3(5):e424. 11 Sikorski C, Ashine M, Zeleke Z, Davey G. Effectiveness of a simple lymphoedema treatment regimen in podoconiosis management in southern Ethiopia: one year follow-up. PLoS Negl Trop Dis 2010; 4(11):e902. 12 Tekola F, Ayele Z, Hailemariam D et al. Development and testing of a de novo staging system for podoconiosis. Trop Med Int Health 2008; 13:1277–83. 13 WHO. Adherence to long-term therapies: evidence for action. Geneva: World Health Organization; 2012. www.who.int/hiv/pub/prev_care/ lttherapies/en/index.html [accessed 26 September 2013]. 14 Wood B. Medication adherence: the real problem when treating chronic conditions. US Pharm 2012;37(4 Compliance Suppl):S3–6.
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20 Tekola F, Bull SJ, Farsides B et al. Tailoring consent to context: designing an appropriate consent process for a biomedical study in a low income setting. PLoS Negl Trop Dis 2009;3(7):e482. 21 Tora A, Davey G, Getnet T. Factors related to discontinued clinic attendance by patients with podoconiosis in southern Ethiopia: a qualitative study. BMC Public Health 2012;12:9. 22 Ethiopian Central Statistical Agency EthioInfo. 2007. http://www.csa. gov.et/ [accessed 25 September 2013]. 23 Central Statistical Agency. Summary and Statistical Report of the 2007 Population and Housing Census Results. Federal Democratic Republic of Ethiopia: Population Census Commission; 2008. 24 Aikins A, Boynton P, Atanga L. Developing effective chronic disease interventions in Africa: insights from Ghana and Cameroon. Global Health 2010;6. http://www.globalizationandhealth.com/content/6/1/6 [accessed 25 September 2013]. 25 Dixon-Woods M, Cavers D, Agarwal S et al. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Med Res Methodol 2006;6:35. http://www. biomedcentral.com/1471-2288/6/35 [accessed 23 September 2013].
Downloaded from http://inthealth.oxfordjournals.org/ at University of Texas at San Antonio on November 19, 2015
6 Alemu G, Ayele FT, Daniel T et al. Burden of podoconiosis in poor rural communities in Gulliso Woreda, West Ethiopia. PLoS Neglected Tropical Diseases 2011;5(6):e1184.
