Filaria Journal
BioMed Central
Open Access
Perspectives
Socio-cultural insights and lymphatic filariasis control – lessons
from the Pacific
Shona Wynd*1, David N Durrheim1, Jaime Carron2, Billy Selve3, JP Chaine4,
Peter A Leggat1 and Wayne Melrose1
Address: 1World Health Organization Collaborating Centre for the Control of Lymphatic Filariasis, James Cook University, Douglas, Townsville,
4811, Australia, 2Tabubil Hospital & Community Centre, Western Province, Papua New Guinea, 3Divine Word University, Madang, Papua New
Guinea and 4Pacific Islands Health Officers' Association, B.O. Box 2059, Pohnpei, 96941, Federated States of Micronesia
Email: Shona Wynd* - shona.wynd@bluewin.ch; David N Durrheim - David.Durrheim@hnehealth.nsw.gov.au;
Jaime Carron - jcarron3@hotmail.com; Billy Selve - bselve@dwu.ac.pg; JP Chaine - fsmshots@mail.fm; Peter A Leggat - peter.leggat@jcu.edu.au;
Wayne Melrose - wayne.melrose@jcu.edu.au
* Corresponding author
Published: 17 February 2007
Filaria Journal 2007, 6:3
doi:10.1186/1475-2883-6-3
Received: 8 November 2004
Accepted: 17 February 2007
This article is available from: http://www.filariajournal.com/content/6/1/3
© 2007 Wynd et al; licensee BioMed Central Ltd.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0),
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract
Background: Sustainable and equitable health programmes require a grounded understanding of
the context in which they are being implemented. This socio-cultural understanding is pivotal for
effective delivery of elimination programmes. Standardised valid methods are needed for gathering
authentic socio-cultural insights. The currently recommended protocol for collecting Lymphatic
Filariasis (LF) related socio-cultural data, while moving in the right direction, is inadequate. To
collect data which provides an understanding of local health beliefs and practices, and communities'
understanding of LF, techniques must be developed that are both valid and time efficient. An
approach developed in the Pacific provides a basic snapshot of socio-cultural insights which are
crucial to the development of relevant and sustainable health education and elimination
programmes.
Summary: The increasing interest in socio-cultural LF research presents a unique opportunity for
coupling socio-cultural and bio-medical understandings of LF. To address the backlog in the sociocultural sphere will require investment of time and effort to integrate valid qualitative approaches
into current data collection methodologies.
Background
Lymphatic filariasis (LF) exacts an enormous infectious
toll, affecting approximately 80 tropical and sub-tropical
countries. Prevalence mapping is ongoing but a billion
people are estimated to be at risk of infection, with 120
million already infected and 40 million seriously incapacitated or disfigured by the disease [1]. While the disease
does not result directly in death, it is, after mental illness,
the second most common cause of long-term disability
globally [2]. One third of people infected with LF live in
India, a third live in Africa and the remainder live in
Papua New Guinea, Southeast Asia, the Pacific Islands
and the Americas.
Limited sociological data has been gathered to illuminate
the sociocultural factors that influence lymphatic filariasis
(LF) occurrence and the success of programmes implemented to eliminate the disease. While there is a growing
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Filaria Journal 2007, 6:3
recognition of the necessity of socio-cultural insights to
support effective elimination programmes [3], there
remains a dearth of field expertise and a lack of pragmatic
data collection techniques to fill the void.
We highlight the important role that socio-cultural
insights play in supporting an effective elimination programme. Further we introduce a useful methodology for
surveying the knowledge and perceptions of local populations and briefly illustrate its value following application
in two Pacific contexts.
Papua New Guinea (PNG) is the country with the greatest
remaining burden of lymphatic filariasis (LF) in the Western Pacific Region [4]. Although the current National
Health Plan has integrated LF planning into its vectorborne disease control programme [5], PNG is the only
endemic country in the Region that has not yet introduced
a countrywide programme to eliminate LF.
However, there have been some government-private sector initiatives, such as that on Misima Island in rural
Milne Bay Province, Papua New Guinea, where the government and private sector have collaborated to implement a pilot control programme [6]. Historically, Misima
Island has experienced a high prevalence of filariasis. A
survey conducted on the Island in 1997 found a prevalence rate of 56% using immunochromatographic card
tests [7].
Over a five year period the Misima Island LF control programme combined ongoing awareness campaigns with
annual single-dose administration of diethylcarbamazine
(DEC) and albendazole for all community members. This
approach dramatically reduced infection rates to below
two percent [7]. While the success of the Misima Island
programme has been attributed to the utilisation of local
social structures and communication networks during the
mass drug administration (MDA) campaigns, little is
known about the perceptions of Misima Island residents
about LF and the annual MDA.
In contrast to PNG, the Federated States of Micronesia
(FSM), consisting of the states of Yap, Chuuk, Pohnpei
and Kosrae, was until recently thought to have a very low
incidence of LF and not considered endemic [4]. There
was very little understanding of socio-cultural beliefs
regarding LF or health-seeking behaviour. Surveys using
immunochromatographic card tests conducted in 1999/
2000 and 2001 indicated that Chuuk Lagoon Islands and
Yap State had incidences of 0.2% and 0.5%, respectively.
However, in 2002 a survey found a 34.4% prevalence rate
by rapid card tests and a microfiliaremia rate of 18.7% on
the island of Satawal in Chuuk [8]. In response an MDA
http://www.filariajournal.com/content/6/1/3
was conducted in 2003 and a second is planned for the
end of 2004.
Discussion
Recognising the value of socio-cultural insights
While explicit acknowledgement by the wider LF research
and control community of the importance of sociobehavioural understandings for achieving optimal programme success is encouraging [9], the WHO recommended approach for gathering socio-cultural
information from affected communities had major shortcomings [10]. The protocol reflects a philosophy that
aims to capture superficial data from a wide geographical
catchment area, focusing on a limited number of data
items collected from a small number of respondents in a
large number of sites. The design attempts to move
towards the qualitative paradigm, but fails to make sufficient commitment to pursuing new understanding from
the point of view of the local communities. It overlooks
the fact that local definitions and explanations for LF are
completely unrelated to scientific, bio-physical models of
health. The protocol assumes a shared "western" understanding of health and of LF, and attempts to confirm
whether or not communities are compliant with bio-medically oriented local elimination programmes. This resulting hybrid of questions that appeared to be qualitatively
oriented, does not actually achieve the central goal of
improving understanding of the degree to which communities are actually aware that LF is present, and the manner
in which they respond to the illness.
We adapted the protocol in two stages. In the first stage we
reduced the recommended size of geographical area covered, but surveyed more people within that area. In PNG
we found that adaptation of this protocol allowed a richer
understanding in a smaller sample of communities. We
conducted eight focus group discussions and key informant interviews in four villages. The villages were purposively selected to take account of differential remoteness,
proximity to the employing mine and available health
facilities. Purposive sampling was used to identify groups
of teenage males, teenage females, adult males and adult
females in each village, with 137 volunteer participants.
Two to four key informants per village were identified and
interviewed for a total of 13 individuals. The key informants were generally prominent village members, such as
ward councillors, pastors, Ward Development Committee
members, teachers, elders, and Women's Fellowship leaders.
It is clear that many of the questions in the currently recommended protocol were developed for use in populations where chronic manifestations of LF remain
commonplace, and this is certainly not the case on
Misima Island or many other Pacific countries. If the large
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number of prompts related specifically to elephantiasis
and hydrocoele are rigorously adhered to, little time
remains to probe more subtle presentations. Respondents
tend to be distracted by many irrelevant questions. The
questions presuppose a shared definition of LF by communities and the designers or implementers of the survey
tool. Unsurprisingly, Misima Island respondents had difficulty relating to the bio-medical interpretation of LF that
underpinned the question outline [forthcoming paper].
In the second stage of our adaptation, we used the findings from our PNG experience to inform the redesign of
the tool for use on the Federated States of Micronesia.
Before data collection began, key theme areas were identified. On the basis of these themes, open-ended questions
were designed to prompt discussion around these issues
[11]. Before introducing the issue of LF, local health priorities were explored and the health issues considered
important from a local perspective were identified. The
question outline then described various LF symptoms and
prompted discussion regarding the presence of such manifestations in the area, local names, and local approaches
to treating the disease. Following this discussion, the
question outline introduced the topic of the disease
known as LF, probing whether local people considered it
the same disease, which then led into discussion concerning the formal health system's approach to and treatment
of the disease.
On the islands of Satawal, Weno and Chuuk in FSM, the
local chief, a local health worker, a religious leader, a
women's group leader, and a teacher were interviewed. In
addition to these specific individuals, six randomly
selected (3 male and 3 female) village members were consulted and asked to identify the figures in the community
that they perceived to be key informants. Emphasising
content over structure, the conversational style of the
interview process proved very effective in eliciting insightful understandings.
Realistic expectations of socio-cultural research
In gathering socio-cultural information, researchers must
begin from the perspective of the people with whom they
are trying to establish a meaningful dialogue. Attempts to
administer qualitative-style questions in the manner of a
quantitative structured study design will not yield valuable results. If we assume that the people we are interviewing share our biomedical interpretation of disease, we will
engage in exchanges that do not improve our understanding of prevailing perceptions or the impact of LF on
affected people's lives. Flawed information or understanding leads us to establish sub-optimal programmes [3].
Valid qualitative research approaches can provide
immensely useful data that allows us to design educa-
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tional and interventional programmes in partnership with
affected communities that will ensure high coverage, community support and sustainable control benefits [12,13].
Even an imperfect protocol allowed identification of a
number of important issues related to MDA delivery in
PNG that have implications for future planning of LF control in that country. Perhaps most importantly, we found
that, while the programme depended heavily on the
authority of village elders, the younger generation were
beginning to resist continued compliance with MDA-style
programmes. As the effects of LF were rarely seen, some
younger people expressed the belief that the disease was
no longer a threat and were not convinced that they
would participate in future MDA campaigns. Despite the
attempts that had been made to inform people of the
nature of the disease, misinformation and misunderstanding were commonly expressed
In FSM, refined data collection techniques permitted
more holistic understandings of LF and its affect on the
health of the community. An in-depth snapshot of local
understanding of basic health beliefs and health service
provision in the three communities was established, while
understandings and behaviours relating to the occurrence
of LF were successfully probed. Although the majority of
islanders knew or had heard of someone with elephantiasis or hydrocoele, there was very limited understanding of
the cause or transmission cycle of LF. Confusion existed
regarding the prevention and treatment of LF, and health
staff themselves were insufficiently informed to educate
people. Individuals from the outer islands generally
appeared to delay until they were suffering from complications before seeking help from the health services on the
larger island. Fever attacks and lymphatic tissue inflammation consistent with acute adenolymphangitis was
widely reported, and these symptoms were frequently
attributed to super-natural causes [8].
These basic findings, although requiring more in-depth
study, provide an important framework from which to
begin to plan the information campaign necessary to
assist the community in interpreting LF transmission and
maximally benefiting from appropriate care-seeking.
Summary
The increasing interest in socio-cultural LF research
presents a unique opportunity for coupling socio-cultural
and bio-medical understandings of LF, however, the limited tradition in the former is striking. Although, it would
be preferable to conduct long-term ethnographic studies
in populations affected by LF, the firm commitment to a
time-bound elimination programme demands rapid
appraisal approaches. The initial insights gleaned from indepth interviews and focus group discussions with key
informants regarding their beliefs and practices related to
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Filaria Journal 2007, 6:3
LF and its impact on local communities clearly indicates
the immense value of applying this knowledge to further
enhancing the efforts of communities and control programmes. The analysis of socio-cultural data, supported
and triangulated with concurrent parasitological, epidemiological and entomological data provides a very valuable repository of information for adapting and refining
control efforts that are both responsive to community
needs and epidemiological realities.
Competing interests
The author(s) declare that they have no competing interests.
http://www.filariajournal.com/content/6/1/3
10.
11.
12.
13.
define today's activities, gaps and needs. GAELF . 4 February
2004
UNDP/World Bank/WHO Special Program for Research and Training in Tropical Diseases: Standardised Study Protocol. Workshop
on Research on Advocacy for Sustained Treatment Compliance in Lymphatic Filariasis Control. Pune, India, 7–12 June 1999 .
A copy of the question outline [http://www.jcu.edu.au]
Gyapong M, Gyapong JO, Adjei S, Vlassoff C, Weiss M: Filariasis in
Northern Ghana: Some cultural beliefs and practices and
their implications for disease control. Soc Sci Med 1996,
43:235-242.
Ramaiah KD, Vijay Kumar KN, Chandrakala AV, Augustin DJ, Appavoo NC, Das PK: Effectiveness of community and health services – organized drug delivery strategies for elimination of
lymphatic filariasis in rural areas of Tamil Nadu, India. Trop
Med Int Health 2001, 6:1062-1069.
Authors' contributions
All authors contributed to the preparation of this manuscript, and have read and approved the final manuscript.
SW coordinated the studies mentioned.
SW and DD designed and analysed these studies; JC collected the data in the field and assisted in analysis; BS,
JPC, PL and WM assisted in study design and logistical
planning of the studies.
Acknowledgements
Misima Mines Ltd and Glaxo Smith Kline provided financial support for conducting this evaluation of the Misima Island Lymphatic Filariasis Control
Programme. A grant from the UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases (Project 990455)
provided support for the community survey. The PNG National Department of Health (MRAC) and the FSM Department of Health is thanked for
their support of the research programme.
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