Health beliefs and health seeking behavior towards lymphatic filariasis morbidity management and disability prevention services in Luangwa District, Zambia: Community and provider perspectives

Background Morbidity management and disability prevention (MMDP) services are essential for the management of chronic stages of lymphatic filariasis (LF) infection. However, there is limited information on health beliefs and health seeking behavior towards MMDP services for LF in endemic regions of Zambia. This study sought to document health beliefs and health seeking behavior towards MMDP services for LF in Luangwa District, Zambia. Methods This was an exploratory qualitative study conducted with community members including LF patients, community health workers and healthcare providers. Data was collected through a series of four focus group discussions stratified by sex and 26 in-depth interviews. Data was analyzed by thematic analysis using NVivo software. Results The perceived causes of the chronic manifestations of LF included; contact with animal faeces, use of traditional herbal aphrodisiacs (mutoto), witchcraft and sexual contact with women who were menstruating or had miscarried. LF patients opted to visit traditional healers before going to health facilities. Hydrocele patients were afraid of hydrocelectomies as they were thought to cause infertility or death. Very few community members were able to identify any home and facility-based care strategies for lymphoedema. Health system and cultural barriers to seeking healthcare included; long distances to the health facilities, lack of awareness of existing MMDP services, perceived costs of accessing MMDP services, gender and social norms, and fear of stigmatization. Conclusion Health seeking behavior for LF in the district is mainly driven by negative beliefs about the causes of the disease and lack of awareness of available MMDP services and homecare strategies. Lymphatic filariasis programs should promote strategies that seek to empower patients and community members with the required information to access and use the MMDP services at the health facilities, as well as adhere to self-care practices in their households.


Abstract:
Background Morbidity management and disability prevention (MMDP) services are essential for the management of elephantiasis, lymphoedema, and hydrocele that result from lymphatic filariasis (LF) infection. However, there is limited information on health beliefs and health seeking behaviour related to MMDP services within LF endemic regions of Zambia. This study sought to document health beliefs and health seeking behaviour for LF MMDP services among communities living in Luangwa District, Zambia.

Methods
This was an exploratory qualitative study conducted with community members including LF patients, community health workers and healthcare providers. Data was collected through a series of 4 focus group discussions stratified by sex and 26 interviews in-depth interviews. Data were analyzed by thematic analysis using NVivo software.

Results
The most commonly mentioned causes of the chronic manifestations of LF included; contact with animal faeces, using traditional herbal aphrodisiacs ( mutoto) , sexual contact with women who were menstruating or had miscarried and witchcraft. LF patients would opt to visit a traditional healer before going to the health facility. Hydrocele patients were reported to be afraid of hydrocelectomies because they thought they would become infertile or die. Very few of the community members were able to identify any home and facility-based care strategies for LF patients. Health system and cultural barriers to seeking healthcare included; long distances to the health facilities, lack of awareness of existing MMDP services, costs of accessing healthcare services, gender and social norms and fear of stigmatization. Conclusion This study found that health seeking behaviour among LF patients are largely driven by the causes associated with the disease. Ongoing community sensitisation and provider capacity building efforts that seek to create demand for existing morbidity management services at primary health care and household levels, as well as address patients' concerns surrounding access to care are necessary. This was an exploratory qualitative study conducted with community members including LF 34 patients, community health workers and healthcare providers. Data was collected through a 35 series of 4 focus group discussions stratified by sex and 26 interviews in-depth interviews. Data 36 were analyzed by thematic analysis using NVivo software. 37

38
The most commonly mentioned causes of the chronic manifestations of LF included; contact 39 with animal faeces, using traditional herbal aphrodisiacs (mutoto), sexual contact with women 40 who were menstruating or had miscarried and witchcraft. LF patients would opt to visit a 41 traditional healer before going to the health facility. Hydrocele patients were reported to be afraid 42 of hydrocelectomies because they thought they would become infertile or die. Very few of the 43 community members were able to identify any home and facility-based care strategies for LF 44 patients. Health system and cultural barriers to seeking healthcare included; long distances to 45 the health facilities, lack of awareness of existing MMDP services, costs of accessing healthcare 46 services, gender and social norms and fear of stigmatization. 47

Conclusion 48
This study found that health seeking behaviour among LF patients are largely driven by the 49 causes associated with the disease. Ongoing community sensitisation and provider capacity 50 building efforts that seek to create demand for existing morbidity management services at 51 primary health care and household levels, as well as address patients' concerns surrounding access 52 to care are necessary. in endemic areas. This study sought to explore community perspectives to morbidity 65 management and disability prevention for LF in a highly endemic region, Luangwa District,66 Zambia between February and April 2019. Some of the common causes of lymphoedema and 67 hydrocele mentioned were; contact with animal faeces, using traditional herbal aphrodisiacs 68 (mutoto), sexual contact with women who were menstruating or had miscarried and witchcraft. 69 There was limited knowledge of home-based and facility-based care strategies for LF patients. Interviews lasted between 45 minutes to an hour. 220

Data analysis 221
A thematic analysis approach was used to analyze the data. In order to determine the different 222 barriers that affect how community members including LF patients access appropriate care, a 223 framework analysis approach was [10]. The study team utilized Levesque et al's conceptual 224 framework on patient centered access to health care which has been extensively used in other 225 studies [7,11,12]. The framework defines access as the "opportunity to reach and obtain 226 appropriate health care services in situations of perceived need for care." It proposes that from a 227 health care provider perspective, access to care can be categorized into five dimensions; 228 approachability, acceptability, availability and accommodation, affordability and 229 appropriateness. Barriers can impact these dimensions which in turn affects an individual's 230 ability to utilize health services. By affecting their ability to perceive, ability to seek, ability to 231 reach, ability to pay and ability to engage with the available health services [1]. These demand 232 and supply side dimensions formed the coding tree from which predetermined themes and sub 233 themes were extracted using both inductive and deductive methods to ensure that existing and 234 emergent themes were exhaustively identified. Preliminary coding of the transcripts was done by 235 PM and AS. JZ reviewed the coding lists to ensure that identified codes were aligned to the to 236 the framework. Subsequently PM, AS and JZ jointly reviewed the codes and developed the final 237 codebook as shown in Table 1. 238  It was apparent from the FGDs and interviews that, patients' decision to seek care from both 303 traditional healers and from the health facility was linked to the prevailing ideas about the causes 304 of the disease. Due to the communal belief that LF is hereditary, patients who had seen their 305 family members exhibiting symptoms and not seeking appropriate care did not see the need to 306 go to a health facility. Moreover, community members who viewed it as a disease that arose due 307 to witchcraft rather than mosquitoes were more likely to seek help from traditional healers. There 308 was also a common belief that the remedies provided by the traditional healers were more 309 effective and permanent solutions in comparison to what was provided at the health facilities. 310 One of the participants who had lymphoedema pointed out; 311 "I have had three years with this disease and here at this clinic they just give me Panadol 312 when I come so I stopped coming because Panadol doesn't work." (FGD 2, Community 313 member) 314 The study participants indicated that some lymphoedema patients would first go to a traditional 315 healers and only go to a health facility once their symptoms became more severe. This was 316 because the tattoos and herbs administered by the traditional healers would exacerbate the acute 317 attacks due to LF forcing the patients to go to the health facility for specialised treatment. 318 "With traditional beliefs you will think let me go and look for traditional medicine and 319 put traditional tattoos. Now when they put tattoos instead of the legs healing they start 320 swelling because traditional tattoos now start bringing sores because people are different, 321 some of them it just starts swelling without any pain and then you go to see some with 322 doctors or to the clinic." [IDI1, Community Health Worker].
Very few of the community members were able to identify any homebased care strategies that 324 could prevent the progression of lymphoedema and reduce the occurrence of acute attacks. In 325 the case of hydrocele, it was rare for patients to go to health facility to seek interventions such as 326 aspiration of fluid or hydrocelectomies because they were afraid of being rendered infertile, fear 327 of undergoing a surgical procedure or that the surgery would leave them in wheelchairs that 328 made it difficult for them to undertake their regular duties. Some participants narrated that they 329 thought the surgical procedure was actually meant to remove the testicles. 330 "Some people are scared to go for operation to say they will be operated, they think when 331 they do they can be gone for good and secondly they say when you are operated you will not 332 have children anymore as a result people go for traditional medicine." (FGD3, Community 333 member) 334 The patients reported that they were afraid to go the health facility because they felt that their 335 conditions had become so advanced that any treatment they received would not lead to an 336 improvement of their symptoms. Healthcare providers and CHWs pointed out that as a result 337 of this, it was common, for hydrocele patients to come into the health facility with very huge 338 swellings. The loss of hope hampered patient motivation to maintain home based care practices 339 which are critical to ensuring that lymphoedema does not progress to elephantiasis, and that 340 surgical interventions are undertaken early for hydrocele. 341 "Say even if am to go to the clinic I won't be healed am already disabled or paralyzed so even 342 if am to go to the clinic I won't be helped, others regardless of the condition being severe, 343 they would remain home and say am disabled already." [IDI3, Community Health Worker]. 344

Health system and cultural barriers to seeking healthcare 345
Distance to health facility 346 Luangwa District is very remote and a portion of the district is covered by the Luangwa National 347 Park. As a result, some communities in the district have to travel long distances of up to 20 348 kilometers and more to the nearest health facility and their access may be inhibited by wildlife 349 attacks such as elephants from the Luangwa National Park. In addition, roads to the health 350 facilities are sometimes impassable and the most common means of transport is bicycles which 351 are inappropriate to transport lymphoedema and hydrocele patients. As such some patients 352 choose to stay home rather than go to the health facility. The district also borders Mozambique 353 and Zimbabwe and patients who may be involved in economic activities which require them to travel across the borders are often missed out when healthcare providers conduct outreach and 355 follow up visits at community level to provide MMDP services as they may not be found at their 356 homes. 357 "Some villages are quite on remote areas. Hence depending on the transportation they 358 may not be able to come from here and also some they come from across our neighboring 359 country across the river in Mozambique." [IDI3, Healthcare Provider]. 360

Lack of awareness of existing MMDP services 361
A recurring theme across the focus group discussions and interviews is that most community 362 members are not aware that there are MMDP services available at the health facilities or that 363 there are home based care strategies that lymphoedema patients can use to prevent the worsening 364 of their conditions. They indicated that the information that was provided to them by the 365 Community Health Workers was mostly focused on the importance of taking part in annual 366 drug distribution exercises during MDA for LF campaigns. Furthermore, other ongoing 367 community sensitisation exercises tended to focus on diseases such as malaria, HIV/AIDS and 368 maternal, newborn and child related conditions, as LF is not perceived to be a public health 369 priority. Nevertheless, the study participants reported that the healthcare providers and CHWs 370 had now begun conducting community outreach and health talks with the help of LF patients 371 who would act as champions to encourage more community members to utilize MMDP services. 372 "What makes these people to come to the clinic, maybe a fellow patient went to the clinic 373 and was assisted then the information is spread to fellows. Then we encourage them that you 374 find you have the right to share with friends that I was helped in this way so that those who 375 are shy can be motivated and go to the clinic openly and express their problems." [IDI3, 376 Community Health Worker]. 377

Costs of accessing healthcare services 378
Majority of the residents in the district are poor and rely on subsistence farming and fishing for 379 sustenance. As such, when deciding on how best to prioritize available resources, they opted to 380 use the minimal resources they had for food and basic necessities before considering spending 381 on health care, particularly for conditions that they thought were incurable. For this reason, 382 some patients may fear going to the health facility to access MMDP services due to the cost they 383 may have to incur to not only access, but also getting to the health facility considering their 384 disability.
"Yes, some they think that way. That they will pay for the operation, they think that if doctors 386 refer me to the theatre where am I going to get the money so it's better I just stay with my 387 swollen legs." [IDI5, Traditional Leader]. 388 Despite services at health facilities being free, there is a perception among community members 389 that they are expected to pay fees for treatment services such as hydrocelectomies which dissuades 390 them from seeking care. Furthermore, the opportunity cost associated with taking time off to go 391 to a health facility is not considered preferable. In the event that a patient is found to have a 392 severe case of hydrocele or lymphoedema requiring specialized treatment at one of the three 393 referral facilities, the associated costs such as hiring transportation and out of pocket hospital 394 expenses act as barriers to accessing care. 1. The authors are presenting the findings of a KAPP (knowledge attitude, practices and perceptions) study on lymphatic filarial disease aetiology and management among three stakeholder groups ( patients, community and health providers) in an endemic setting in the district of Luangwa in Zambia where the majority appear to be of low educational attainment with more or less primitive health care facilities. The writing needs to be improved overall so as to improve the clarity of the message conveyed, Results documented were insufficient and erroneous and not presented clearly.
Thank you very much for your feedback. The authors have reviewed the writing and made suitable edits to ensure that the reader experience is improved.
2. I feel that the title " Access to morbidity management and disability prevention services for lymphatic filariasis in Luangwa district, Zambia: A mixed methods study" is somewhat inappropriate as the manuscript does not detail the availability of MMDP health services in the region (number of health facilities that can perform hydrocelectomies, facilities which provide limb care etc. ). Without knowing the availability of baseline facilities I feel that you cannot discuss access (defined as "opportunity to reach and obtain appropriate health care services in situations of perceived need for care" ) to these services. What the authors are describing are the health seeking behavior of patients and factors that influence the behavior patterns.
and interviews ( specify the group, primary health care providers/ Key informants/ community leaders?) if presented separately may be clearer to the reader as well as the authors Based on the feedback from the reviewers, the authors decided to focus on the qualitative findings and present the quantitative findings as a separate publication. As such the manuscript only present a revised version of the qualitative findings.

5.
Is it possible to specify the key areas that were investigated by the KAPP survey, the questions included to the questionnaire ? used on the patients, In the FGDs were the same questions asked from the community was it approached differently? Was the approach similar for all FGDs? With regard to interviews detail the core areas that were covered We have included a descriptions of the key questions that were asked during the interviews and focus groups as well as added the data collection tools as supplementary file (Lines 184-186 & S1 Appendix).

6.
The basic results documented are erroneous and contradictory, Lines 229 & 230; Patient characteristics There were 237 pts…….199 hydrocele, 27 lymphoedema, 7 both lymphoedema and hydrocele, addition brings the total to 233, Line 320 says of the 22 patients with lymphedema? I think even the authors are not clear about how many patients had lymphoedema. The number of lymphoedema patients are rather low to discuss the morbidity management measures practiced by them. Presenting the results as percentages is not acceptable, include the actual value of the variables as well.
As mentioned above, the quantitative component of the assessment has been removed to focus on the qualitative findings from the interviews and the focus group discussions.

7.
Line 239, Knowledge of lymphedema, elephantiasis and hydrocele, It is important to document the disease knowledge among patients rather than community, there is no data on this aspect.
The selection of participants for the focus group discussions also included lymphoedema and hydrocele patients to ensure that their perspectives were also represented.

8.
With regard to FGD, what was the composition of the sample? (It says a convenient sample) how many patients were included? What was the age range?
The FGDs were comprised of community members aged 18-50 drawn from sampled health facility catchment areas who were able to attend the discussion.

9.
Line 354, Social norms. Appear to be contradictory" Having hydrocele is viewed as a marker of high social standing and men who had it are more likely to be chosen as headmen as they are perceived to be old and wise" and the statement "Though LF patients were considered to be in a pitiful state" and lines 376-380 under Stigmatization " Fear of stigmatization also inhibits patients' ability to seek care….would either deny having the condition or request to talk to them in private because they are afraid that they would be laughed at if other community members found out. Are these statement derived from the FGD or are these the